December 10th
We got to the hospital around 7:30 am. I went straight to get an EKG and then signed in for the Lab. After the short test I went over and my usual phlebotomist was there waiting for me. She is awesome at always finding my vein and gets the 14 tubes drawn before I even realize it. Although I think she wants my husband. She always asks about him... I am not sure how to feel about that. After that we went over to the admitting office to get the paper work down for my procedure. We then went over to the cafeteria to get breakfast. I technically am not suppose to eat but I started having chest pain so I ate a scoop of plain eggs and drank a little bit of orange juice with my morning medication and my pain pill. At this point I thought the food I had eaten would be out of my system before the procedure. They didn't have me scheduled until well after noon anyway. Before I could go back to see the doctor the transplant coordinator came to see me. She had some insurance papers for me to sign. She also let me know she had got a few more offers for hearts for me. I didn't really pay attention because I get tired of being told the "shoulda, coulda, woulda's that never happened". After checking my vitals we waited for Doctor Mountis. She came in shortly after and we spoke for a bit. She told me I had lost 6 pounds of fluid since the last time I had seen her. I think because I changed the way I eat "again" and mastered how to take the torsemide pills it has helped me keep the weight down. Then she said she wanted to know how I felt about everything and what I wanted to be different. She said she could tell I was unhappy with how the transplant team was running my case. So I was honest....
I have been with Cleveland for several years now. I have been waiting and waiting and waiting. I do everything they ask of me. To the point where I worry I will be kicked off the list if I screw up. I feel like I am still at the same place as when I started in 2010. Yes, I am a 1B status now but it makes no difference if I still have high antibodies. No matter what heart I get my body will fight the heart and the rejection rate is so high, lets face it I would die. It is incredibly frustrating to put a pause on your whole life to wait for something that hasn't come. I just want to be without pain, be able to move forward with my life and have a family. So yes being unhappy with current situation is an understatement. As far as what I want, I told her I want to feel as though I am a priority to Cleveland Clinic. I want them to come up with a plan and stick with it. I get tired of them telling me they will do something, admit me, keep me for days and then release me because they changed their minds. It takes a toll on me and my family. So this is what she had to say.....
She understood my feelings and concerns. There is a new drug that we had talked about with Doctor Lee. The medication is a medical trial. It has been used on cancer patients and has helped bring their antibodies down. So they are attempting to try it on heart patients as well to see if it will have the same effect on them. The medication has not been used at the Cleveland Clinic yet. It was studied by Doctor Starling and Doctor Sheesh who are cardiologist at CC and who are part of the transplant team. The Cedar Clinic in Los Angeles has used this drug and has a lot of success with it. The pharmacist for the transplant team came in and spoke with me about the medication. This is what I found out from her.
Bortezomib- used to treat multiple myeloma and lymphoma.
It is given by a doctor as a shot into a vein or into a fatty part of the skin. In my case it will be given right under the skin in my stomach or thigh area.
It is a weekly drug. I would go to the doctors and get the injection. Then they would test my blood and see if it is making a difference or not every 4th week.
Side effects are:
infection
a brain problem called PRES
nerve problems
bleeding easier
liver problems
loss of eyesight
stomach problems
seizures
heart failure
lung problems
Because of all these side effects they want me to start the medication in the hospital.
The pharmacist seemed most worried about the nerve problems, meaning loss of sensation in my hands, feet etc or a tingly feeling. Heart issues, which makes me think, does that mean my heart would get worse? Or am I safe since my heart is already bad? Infection because my immune system would be down. Liver and brain problems. But since I get my blood drawn weekly the liver thing does not worry me because we would know right away. The brain issue on the other hand makes me nervous. I am already forgetful...
I did however ask for the case studies. I want to look at all the information and make the best informed decision I can. So now it is just looking at all the information again. Speaking with my husband, family and friends and making a decision. Is this the best decision for me and my future. A lot to think about! This is not easy for me and very emotional. So I need all the support I can get.
Prayers are welcome and always help. I thank you all for being part of my journey. <3
Wednesday, December 11, 2013
Monday, October 28, 2013
June, July and August Appointments
June- Quick visit, I saw the dentist who had to check and make sure I had no infections. Gyno appointment for annual check and also to make sure I have no infections or disease. Both appointments where quick and I am happy to say I am disease and infection free, yay me! Last was the appointment with Doctor Mountis. It was also quick, she said I was retaining still and increased my my toresimide dose. We went home the next day.. Sweet and simple. Just the way we like it.
July- I seen Doctor Lee this visit because Doctor Mountis was out having a baby. He was a bit concerned with how low my energy was and how bad I was feeling. So he scheduled me for a heart cath for that afternoon. The doctor who was doing the procedure did not want to give me any anxiety medication, even though Dewon and I both told him I would be a mess in the cath lab without it. So we get to the cath lab and I started to panic, like we said, and he finally decided to give me some iv medication. It was still a disaster because the resident who was actually doing the cath didn't know what he was doing. He got the cath wire stuck on my pacemaker wires inside my chest. Which caused my heart to race so I was panicking. Then he had to place a second tube through my neck because he got the other one stuck. So of course I was freaking out and crying. I yelled at the guy too, I just don't think he should be doing my procedure if he does not know what to do correctly. So they then tell me my pressures are really high so they will be admitting me. By this time I was hysterical because the resident was trying to close and twist off the cath and couldn't do it so the doctor had to come do it. It was not a good experience! We went up to the ICU that night. I don't really remember much about that night, the sedation kicked in and I slept all night.
The next morning we woke to the doctors checking my pressures. They said they were amazed because my pressures had went back down to normal range for me. They chalked it up to anxiety that caused my pressures to rise. So they said the next day they would take the cath out and send me down to a step down unit. They also gave me a couple of doses of iv lasix. So the night consisted of a lot of potty brakes and Yahtzee. The next morning the nurse took the cath out and I went to the unit down stairs. We got to walk around finally so Dewon took me to the rooftop and to the gift shop. I get antsy when I have to be in bed for days. It stinks that you can not be out of bed for more than thirty minutes a day with the cath in. After that we just sat around until the docs came in that evening. They spoke with me about discharge in the morning and went over medication. The coordinator came in too and told me the same story as always, They have had calls for hearts for me but they are not good matches for me. It's always that they are too old, too big of a donor or that my antibodies keep me from getting them. It's usually because of the antibodies and that I would reject the heart. I now just get frustrated when they tell me this. It is heart braking and I have been waiting for so long :(. The next morning I was discharged and we went home....
August- This visit was a little different. My brother n law BJ went with me. Dewon was in school so I had went home for the few months he was gone. It was a lot of fun though.. He keeps me laughing and is so much like myself. We seen Doctor Lee again. Dr. Mountis was still on leave. He did an exam and then we had a serious talk about my future. I am normally so nervous and I make sure I do everything they say because I fear I will be dropped and then no one will want to transplant me. Plus I know without transplant I have no future just a death sentence. But something came over me and I told him exactly how I felt. I have been waiting for a transplant for five years at two different clinic. Three of the years with them and I have not progressed besides moving from a 2 status to a 1B. Although I am happy about this it does not change the fact that I am still not much closer to a heart. Because of my antibodies my heart will reject 96% of the new hearts. This is a reality I don't share much and try to stay optimistic about. The reality is its a one in a million chance they will actually find me a good enough match without addressing the antibody problem. Dr. Lee understood this and my frustration. With tears in my eyes I told him I know I have to get worse before things will get better but I also don't want my husband to come home to a dead wife either. So he said he would bring up my concerns with the board and call me within the week. I felt like someone finally understood and was trying to help instead of just saying what I wanted to hear.
Doctor Lee did call me. He stated that the board did not find it necessary to address the antibodies right now. They wanted to wait for Doctor Mountis to get back and reevaluate my case. He sounded defeated, I could tell he wanted to get me in and start.....something........
My appointment for September was canceled. Doctor Mountis had a family emergency so I was rescheduled for when she returns. No date has been set yet. However the coordinator reassured me that we would be meeting with Mountis and one of the heads of the board, Dr Stearling, to discuss my case.
There is a new medication that is out that will help decrease the antibodies that is also less invasive. I hope to learn more about this at the next appointment. We shall see.......
July- I seen Doctor Lee this visit because Doctor Mountis was out having a baby. He was a bit concerned with how low my energy was and how bad I was feeling. So he scheduled me for a heart cath for that afternoon. The doctor who was doing the procedure did not want to give me any anxiety medication, even though Dewon and I both told him I would be a mess in the cath lab without it. So we get to the cath lab and I started to panic, like we said, and he finally decided to give me some iv medication. It was still a disaster because the resident who was actually doing the cath didn't know what he was doing. He got the cath wire stuck on my pacemaker wires inside my chest. Which caused my heart to race so I was panicking. Then he had to place a second tube through my neck because he got the other one stuck. So of course I was freaking out and crying. I yelled at the guy too, I just don't think he should be doing my procedure if he does not know what to do correctly. So they then tell me my pressures are really high so they will be admitting me. By this time I was hysterical because the resident was trying to close and twist off the cath and couldn't do it so the doctor had to come do it. It was not a good experience! We went up to the ICU that night. I don't really remember much about that night, the sedation kicked in and I slept all night.
The next morning we woke to the doctors checking my pressures. They said they were amazed because my pressures had went back down to normal range for me. They chalked it up to anxiety that caused my pressures to rise. So they said the next day they would take the cath out and send me down to a step down unit. They also gave me a couple of doses of iv lasix. So the night consisted of a lot of potty brakes and Yahtzee. The next morning the nurse took the cath out and I went to the unit down stairs. We got to walk around finally so Dewon took me to the rooftop and to the gift shop. I get antsy when I have to be in bed for days. It stinks that you can not be out of bed for more than thirty minutes a day with the cath in. After that we just sat around until the docs came in that evening. They spoke with me about discharge in the morning and went over medication. The coordinator came in too and told me the same story as always, They have had calls for hearts for me but they are not good matches for me. It's always that they are too old, too big of a donor or that my antibodies keep me from getting them. It's usually because of the antibodies and that I would reject the heart. I now just get frustrated when they tell me this. It is heart braking and I have been waiting for so long :(. The next morning I was discharged and we went home....
August- This visit was a little different. My brother n law BJ went with me. Dewon was in school so I had went home for the few months he was gone. It was a lot of fun though.. He keeps me laughing and is so much like myself. We seen Doctor Lee again. Dr. Mountis was still on leave. He did an exam and then we had a serious talk about my future. I am normally so nervous and I make sure I do everything they say because I fear I will be dropped and then no one will want to transplant me. Plus I know without transplant I have no future just a death sentence. But something came over me and I told him exactly how I felt. I have been waiting for a transplant for five years at two different clinic. Three of the years with them and I have not progressed besides moving from a 2 status to a 1B. Although I am happy about this it does not change the fact that I am still not much closer to a heart. Because of my antibodies my heart will reject 96% of the new hearts. This is a reality I don't share much and try to stay optimistic about. The reality is its a one in a million chance they will actually find me a good enough match without addressing the antibody problem. Dr. Lee understood this and my frustration. With tears in my eyes I told him I know I have to get worse before things will get better but I also don't want my husband to come home to a dead wife either. So he said he would bring up my concerns with the board and call me within the week. I felt like someone finally understood and was trying to help instead of just saying what I wanted to hear.
Doctor Lee did call me. He stated that the board did not find it necessary to address the antibodies right now. They wanted to wait for Doctor Mountis to get back and reevaluate my case. He sounded defeated, I could tell he wanted to get me in and start.....something........
My appointment for September was canceled. Doctor Mountis had a family emergency so I was rescheduled for when she returns. No date has been set yet. However the coordinator reassured me that we would be meeting with Mountis and one of the heads of the board, Dr Stearling, to discuss my case.
There is a new medication that is out that will help decrease the antibodies that is also less invasive. I hope to learn more about this at the next appointment. We shall see.......
Monday, June 10, 2013
exercise fail
For the past almost month I have been exercising. Well as much as the doctors and my husband will let me. I do squats and ab exercises mainly. My husband has been a great motivator and I actually like working out with him. But..... this weekend I over did it and passed out. I was starting to fill my heart thumping hard but figured it would settle and kept going. Well minutes later I was OUT. Needless to say my husband says no more exercise for me. I get extremely frustrated because I want to do this and I want to have a healthy in shape body for transplant. Instead I feel fat and lazy because of the retention and lack of daily exercise. It is really starting to bother me. I am use to being a small string bean gal and this whole big belly thing is getting old. So for now I will rest and maybe pick it back up once I speak to my doctors....
Sunday, May 26, 2013
April 4th Appointment
So I am a little behind with posting about this appointment but here is goes.... Short Sweet and Simple :)
Wednesday April 3rd was like any other travel day for me. I woke up and Dewon and I got to the airport early in the morning. After a pretty easy flight we got to Cleveland. The only thing I remember about this flight was that I really noticed how much I was retaining. We got to the hotel and I rested. Room service and a movie later I was in bed for the night.
Thursday April 4th was suppose to be an easy day. Only a few appointments and we were suppose to be out of there by noon. After labs and an ekg we went to see Dr. Varma my doctor for my ICD. He is always easy and very brief. He let me know that everything looked good and that he would be keeping me on my medication (tikosyn). This medication keeps me from having irregular heart beats. There was some question about taking me off the tikosyn but he decided against it, 'why change something that we already know works' kind of decision. So after we got out of there we went to see Dr. Mountis. And if you follow my blog you know that she is my transplant doctor. She told me what I already knew, which was I was retaining a lot. She increased a medication and told me to call her and let her know if the slight change helped or not. After leaving her office I started to not feel good. I though I was just tired so we went straight back to the hotel so I could rest. After a few hours I told Dewon it was really hard for me to breathe and that I had some pain. So he ran me a hot bath and gave me some pain and anxiety medication hoping I would feel better after my bath. Well an hour later it was just getting worse. So Dewon put me in a wheel chair late at night and walked me to the ER. Well if you don't know the Cleveland Clinic lay out let me tell you the experience we had. All the doors were locked so we could not get back into the main hospital so we had to go around the whole building. Meanwhile it is freezing and poor Dewon is pushing me probably 3 blocks down to get to the ER. We got lost once and almost gave up several times. Not fun at all! So we get to the ER and I get right in to the back. They rush me through triage and then put me in a room. Well this is when it goes down hill. We sat in the ER for about an hour. They did not hook me up to any monitor or oxygen. We watched nurse after nurse pass by and then finally after asking, waving and pleading a doctor came in and took care of everything. I love Cleveland Clinic but they need to get the ER staff together. Anyways, I was instantly admitted and brought up to the heart unit. They started on IV drugs to get the fluid off. 40 of lasix at 1am in the morning is a pain in the rear. Especially when you are tired and worn out. They also gave me Dilaudid for the pain. After they gave me the medication I started dry heaving so they gave me something for nausea too. After 3 am I finally settled and fell asleep. It had been a long day.
Friday and Saturday April 5th & 6th Nothing exciting happened I had more pain which called for more dilaudid and nausea medication. Plus more IV lasix to get the fluid off my lungs that I had retained. I pretty much stayed in the bed and was hooked up to the oxygen most of the day. I did have a few moments when I felt better but then I would get real tired and back to bed I went. Also I was sick most of the time so food was just not an option and probably made things worse for me.
Sunday April 7th I started to feel better. My weight was still not going down but I did get a good amount of fluid off my lungs. I got a visit from my coordinator who had some paper work for me to sign. Every year I have to re sign paper work so that my insurance can be billed for the transplant and all my end of life documents can be filled for the day I get the call for transplant. She also told Dewon and I that she had a few phone calls for a possible heart match to me but every time there was something that stopped me from getting it. When she told me I got sad. Either the donor was too old for me or because of my antibodies I could not receive the heart. In my mind I was perfectly find thinking there were no hearts for me yet but knowing they had calls and I could have had one some how broke me. I tell myself I don't want any heart. I want the perfect heart for me and that is why I have been waiting so long but in that instant I was angry and completely broken. I strive to be strong and optimistic and look for positives in my situation but I am human and sometimes I just can't be that. I am so glad I have my husband who held me like a baby while I cried that night, without him I don't know where I would be. I have been waiting since the doctors in Florida told me I would need a new heart for almost 5 years now but only 3 years at Cleveland. July of 2008, The day that changed everything for me.
Monday April 8th The docs came in and told me they would be releasing me. I hadn't had pain within the last 24 hours and I had lost a lot of fluid so they were happy with sending me home with some lab orders and medication tweaking So sometime after noon they finally came around and discharged me. I think Dewon was more excited then I was because he practically ran back to the hotel with me in the wheel chair. We both climbed in bed and caught up on sleep. We flew out the next day and were back in Virginia on the 9th. Home Sweet Home!!
Wednesday April 3rd was like any other travel day for me. I woke up and Dewon and I got to the airport early in the morning. After a pretty easy flight we got to Cleveland. The only thing I remember about this flight was that I really noticed how much I was retaining. We got to the hotel and I rested. Room service and a movie later I was in bed for the night.
Thursday April 4th was suppose to be an easy day. Only a few appointments and we were suppose to be out of there by noon. After labs and an ekg we went to see Dr. Varma my doctor for my ICD. He is always easy and very brief. He let me know that everything looked good and that he would be keeping me on my medication (tikosyn). This medication keeps me from having irregular heart beats. There was some question about taking me off the tikosyn but he decided against it, 'why change something that we already know works' kind of decision. So after we got out of there we went to see Dr. Mountis. And if you follow my blog you know that she is my transplant doctor. She told me what I already knew, which was I was retaining a lot. She increased a medication and told me to call her and let her know if the slight change helped or not. After leaving her office I started to not feel good. I though I was just tired so we went straight back to the hotel so I could rest. After a few hours I told Dewon it was really hard for me to breathe and that I had some pain. So he ran me a hot bath and gave me some pain and anxiety medication hoping I would feel better after my bath. Well an hour later it was just getting worse. So Dewon put me in a wheel chair late at night and walked me to the ER. Well if you don't know the Cleveland Clinic lay out let me tell you the experience we had. All the doors were locked so we could not get back into the main hospital so we had to go around the whole building. Meanwhile it is freezing and poor Dewon is pushing me probably 3 blocks down to get to the ER. We got lost once and almost gave up several times. Not fun at all! So we get to the ER and I get right in to the back. They rush me through triage and then put me in a room. Well this is when it goes down hill. We sat in the ER for about an hour. They did not hook me up to any monitor or oxygen. We watched nurse after nurse pass by and then finally after asking, waving and pleading a doctor came in and took care of everything. I love Cleveland Clinic but they need to get the ER staff together. Anyways, I was instantly admitted and brought up to the heart unit. They started on IV drugs to get the fluid off. 40 of lasix at 1am in the morning is a pain in the rear. Especially when you are tired and worn out. They also gave me Dilaudid for the pain. After they gave me the medication I started dry heaving so they gave me something for nausea too. After 3 am I finally settled and fell asleep. It had been a long day.
Friday and Saturday April 5th & 6th Nothing exciting happened I had more pain which called for more dilaudid and nausea medication. Plus more IV lasix to get the fluid off my lungs that I had retained. I pretty much stayed in the bed and was hooked up to the oxygen most of the day. I did have a few moments when I felt better but then I would get real tired and back to bed I went. Also I was sick most of the time so food was just not an option and probably made things worse for me.
Sunday April 7th I started to feel better. My weight was still not going down but I did get a good amount of fluid off my lungs. I got a visit from my coordinator who had some paper work for me to sign. Every year I have to re sign paper work so that my insurance can be billed for the transplant and all my end of life documents can be filled for the day I get the call for transplant. She also told Dewon and I that she had a few phone calls for a possible heart match to me but every time there was something that stopped me from getting it. When she told me I got sad. Either the donor was too old for me or because of my antibodies I could not receive the heart. In my mind I was perfectly find thinking there were no hearts for me yet but knowing they had calls and I could have had one some how broke me. I tell myself I don't want any heart. I want the perfect heart for me and that is why I have been waiting so long but in that instant I was angry and completely broken. I strive to be strong and optimistic and look for positives in my situation but I am human and sometimes I just can't be that. I am so glad I have my husband who held me like a baby while I cried that night, without him I don't know where I would be. I have been waiting since the doctors in Florida told me I would need a new heart for almost 5 years now but only 3 years at Cleveland. July of 2008, The day that changed everything for me.
Monday April 8th The docs came in and told me they would be releasing me. I hadn't had pain within the last 24 hours and I had lost a lot of fluid so they were happy with sending me home with some lab orders and medication tweaking So sometime after noon they finally came around and discharged me. I think Dewon was more excited then I was because he practically ran back to the hotel with me in the wheel chair. We both climbed in bed and caught up on sleep. We flew out the next day and were back in Virginia on the 9th. Home Sweet Home!!
Sunday, March 24, 2013
March 20th ER visit
This past weekend I played Dance Central 3 with my husband. The sad thing is I only did one song, Boom Boom Pow and well that was the end of me. It was a ton of fun and I totally out danced my husband who thinks he is amazing. But of course I pretty much died, I couldn't breathe and seconds later I was hunched over on the floor in pain. At the time I didn't think it was too bad actually, I just took some pain medication and went to bed. I guess I can not be a dance star after all :). Well the following days were horrible. I had terrible chest pain and was taking pain medication every four hours just to try and keep the pain under control. I held strong for as long as I could but finally Wednesday I had a friend take me to the ER by my house. After labs, chest x-ray and an abnormal ekg they called Cleveland to ask what to do. I could tell the doctor was a little nervous, she hugged me and said she would make sure to ease the pain. I at this point was in tears. After holding it all in and trying to be strong the flood gates opened and out came the tears. They gave me 4mg of morphine and zofran to help with the pain and nausea. after thirty minutes the pain was still present so they gave me another 4mg of morphine. If you know me you know I get a little loopy and drowsy with pain medication. After all they had given me I was a complete mess and soon was sound asleep. They came back in and gave me some iv lasix per Cleveland's request, some food and told me they would be sending me home within the hour.
The one thing about having heart failure and this whole transplant thing is the pain is excruciating. Not to mention when you try to explain what it feels like you can never find the right words to explain how it really feels. It's just hard to explain. On top of all the pain I am always retaining fluid so I can't breathe either. Just a vicious cycle that never seems to end. The topping on the cake is this phrase "I'm sorry but this is what you will have to deal with until you are transplanted.", "It only gets worse before it gets better." REALLY?!? Well that sucks!
The one thing about having heart failure and this whole transplant thing is the pain is excruciating. Not to mention when you try to explain what it feels like you can never find the right words to explain how it really feels. It's just hard to explain. On top of all the pain I am always retaining fluid so I can't breathe either. Just a vicious cycle that never seems to end. The topping on the cake is this phrase "I'm sorry but this is what you will have to deal with until you are transplanted.", "It only gets worse before it gets better." REALLY?!? Well that sucks!
Thursday, March 7, 2013
post transplant bucket list
Many of you know that I have been limited to what I can do because of my heart condition so lately I have been thinking of a ll the things I will be able to do post transplant and well my mind has been wondering but here is what I have come up with not really a bucket list but things I look forward to....
Bucket List of Sorts:
1. Be independent again!!!
2.Run in a marathon for a good cause
3. Get drunk one time and make some questionable decisions...lol
4. Be able to wrestle with Dewon and take him down without getting chest pain
5. Participate in the transplant Olympics
6. Dance until my legs give out
7. Exercise
8. Travel out of country
9. Have kids and be able to keep up with them
10. Walk and shop through an entire mall without being tired
11. Eat the sloppiest, greasiest food and not have to worry about the sodium content.
12. Work at AHA and make a difference
I am sure I will add more as I think of other exciting things I want to do and accomplish
In life we take the little things for granted and I am way too excited to make new memories and enjoy my life with my husband and family. I thank God for each day that I have and cherish everything he has given me but there is nothing wrong with wishing for a little more ;)
Bucket List of Sorts:
1. Be independent again!!!
2.Run in a marathon for a good cause
3. Get drunk one time and make some questionable decisions...lol
4. Be able to wrestle with Dewon and take him down without getting chest pain
5. Participate in the transplant Olympics
6. Dance until my legs give out
7. Exercise
8. Travel out of country
9. Have kids and be able to keep up with them
10. Walk and shop through an entire mall without being tired
11. Eat the sloppiest, greasiest food and not have to worry about the sodium content.
12. Work at AHA and make a difference
I am sure I will add more as I think of other exciting things I want to do and accomplish
In life we take the little things for granted and I am way too excited to make new memories and enjoy my life with my husband and family. I thank God for each day that I have and cherish everything he has given me but there is nothing wrong with wishing for a little more ;)
Monday, March 4, 2013
march appointment 2013
Sunday March 3rd
It was really hard to get out of bed. I probably hit the snooze three times but finally got up and moving. After getting dressed I let the dogs out and fed them. By that time Dewon was up and ready so I grabbed the few last minute things I needed and we were quickly out the door and headed for the airport. The flight was smooth, no turbulence this time, and it seemed like we got to Cleveland faster than normal. The down fall though was we had to get food before we went to claim our bags. I waited to eat and was starting to have vision problems so we decided it would be best to get something in me before I passed out. So after finding some chicken fingers we were on our way to the hotel. Same routine after that eat and nap. At six we went over to the guest house, a lot of patients stay there after they get discharged from the hospital until they are cleared to go home. We had dinner at this little Deli there with the girl who I had met the last time I was admitted, the one who had a heart transplant. I felt kind of bad because as soon as she came in I started asking her questions. She said she was doing great and was able to ride a bike in physical therapy for a few miles. That she felt amazing working out and was hopeful to go home the coming Wednesday. I asked her about her water retention and she too retained in her abdomen area. She said after the transplant it basically just melted away and she noticed a huge change. This I am really looking forward to. I am ready to be small again and not look preggo. Every time I talk to her I just get this overwhelming feeling of joy and hope. Not only is she an awesome person but she also makes me less scared and anxious about what I am about to endure. I just think if she can do it so can I. To see her smile and tell me about the things she is now able to do makes me want to do the transplant today...
Monday March 4th
Today felt like it dragged on and on. I waited an hour in the lab department for blood work after my EKG. After missing one appointment waiting they finally told me to go ahead to my next appointment and come back later, they were slammed packed. I did however meet the cutest old man while waiting and a couple who was there to find out if her husband had cancer after he had a piece of his bladder removed. I guess they found a spot on his kidney after the surgery and was worried. They were the nicest people and after sharing our stories I said a little prayer and went on about my day. My appointment with Doctor Mountis was pretty quick. She instructed me to keep up with all my same medications and to take metolizone (a booster pill to help the torsemide) when I get home. She also said I might have to take the metolizone once a week just to help me keep my weight down and keep the fluid off. We also discussed it and because I have had so much anxiety lately we felt it would be best for me to start on a low dose of prozac to help me from having panic attacks and therefore having heart issues. I have had so much stress the last few weeks with the whole transplant "upgrade", finding out who my true friends are the hard way, and of course Dewon being a pain in my rear. So hopefully this medication will keep me from having a freaking heart attack because I can't handle anything else on plate right now. I also had a visit with Doctor Varma who is my doctor for my AICD ( the device that keeps my heart beating and shocks me if it goes too fast). He said everything looked good with my device. The only thing he had a concern about was that I was having some atrial tachycardia ( fast heart rate in the top chamber of my heart). So he would discuss with Dr. Mountis about starting me on cumadin to replace the aspirin I take. I will find out what they decide when I come back in a month. After that we went back down to get my blood work finally. Then we headed on back to the hotel where I fell asleep. After waiting hours for each appointment and the day slowly dragging I couldn't take it anymore, my poor body was hurting. So now we lay here and watch T.V. back to Ft. Belvoir tomorrow and to our regularly scheduled lives.
On a side note I plan to do a bucket list for when I get a heart. I know its a little backwards but I have so much I want to do when I get to feeling better I want to put it on paper. So look forward to seeing that soon. I have probably not made any sense in this last update but I am tired and hungry again so I am off to get some food so I can hit the sack. Thank you as always for your support and prayers! <3
By the way I seen the couple on the way out of the hospital and the guys tests came back that he had no cancer. Praise the Lord! A wonderful end to my hectic day.
It was really hard to get out of bed. I probably hit the snooze three times but finally got up and moving. After getting dressed I let the dogs out and fed them. By that time Dewon was up and ready so I grabbed the few last minute things I needed and we were quickly out the door and headed for the airport. The flight was smooth, no turbulence this time, and it seemed like we got to Cleveland faster than normal. The down fall though was we had to get food before we went to claim our bags. I waited to eat and was starting to have vision problems so we decided it would be best to get something in me before I passed out. So after finding some chicken fingers we were on our way to the hotel. Same routine after that eat and nap. At six we went over to the guest house, a lot of patients stay there after they get discharged from the hospital until they are cleared to go home. We had dinner at this little Deli there with the girl who I had met the last time I was admitted, the one who had a heart transplant. I felt kind of bad because as soon as she came in I started asking her questions. She said she was doing great and was able to ride a bike in physical therapy for a few miles. That she felt amazing working out and was hopeful to go home the coming Wednesday. I asked her about her water retention and she too retained in her abdomen area. She said after the transplant it basically just melted away and she noticed a huge change. This I am really looking forward to. I am ready to be small again and not look preggo. Every time I talk to her I just get this overwhelming feeling of joy and hope. Not only is she an awesome person but she also makes me less scared and anxious about what I am about to endure. I just think if she can do it so can I. To see her smile and tell me about the things she is now able to do makes me want to do the transplant today...
Monday March 4th
Today felt like it dragged on and on. I waited an hour in the lab department for blood work after my EKG. After missing one appointment waiting they finally told me to go ahead to my next appointment and come back later, they were slammed packed. I did however meet the cutest old man while waiting and a couple who was there to find out if her husband had cancer after he had a piece of his bladder removed. I guess they found a spot on his kidney after the surgery and was worried. They were the nicest people and after sharing our stories I said a little prayer and went on about my day. My appointment with Doctor Mountis was pretty quick. She instructed me to keep up with all my same medications and to take metolizone (a booster pill to help the torsemide) when I get home. She also said I might have to take the metolizone once a week just to help me keep my weight down and keep the fluid off. We also discussed it and because I have had so much anxiety lately we felt it would be best for me to start on a low dose of prozac to help me from having panic attacks and therefore having heart issues. I have had so much stress the last few weeks with the whole transplant "upgrade", finding out who my true friends are the hard way, and of course Dewon being a pain in my rear. So hopefully this medication will keep me from having a freaking heart attack because I can't handle anything else on plate right now. I also had a visit with Doctor Varma who is my doctor for my AICD ( the device that keeps my heart beating and shocks me if it goes too fast). He said everything looked good with my device. The only thing he had a concern about was that I was having some atrial tachycardia ( fast heart rate in the top chamber of my heart). So he would discuss with Dr. Mountis about starting me on cumadin to replace the aspirin I take. I will find out what they decide when I come back in a month. After that we went back down to get my blood work finally. Then we headed on back to the hotel where I fell asleep. After waiting hours for each appointment and the day slowly dragging I couldn't take it anymore, my poor body was hurting. So now we lay here and watch T.V. back to Ft. Belvoir tomorrow and to our regularly scheduled lives.
On a side note I plan to do a bucket list for when I get a heart. I know its a little backwards but I have so much I want to do when I get to feeling better I want to put it on paper. So look forward to seeing that soon. I have probably not made any sense in this last update but I am tired and hungry again so I am off to get some food so I can hit the sack. Thank you as always for your support and prayers! <3
By the way I seen the couple on the way out of the hospital and the guys tests came back that he had no cancer. Praise the Lord! A wonderful end to my hectic day.
Wednesday, February 20, 2013
Feb part 5
Friday evening I went for my CT scan. The results came back that there was no trauma to my brain besides the stroke that they already knew was there. So that was a positive thing. The rest of the night we relaxed. Right before bed I got a visit from a young lady who had just had a heart transplant earlier in the week. She looked amazing and was sitting up in a wheel chair and smiling. We spoke for over an hour about transplant and what I could expect after transplant, her personal story, my story and also her family and boyfriends experience through her transplant. It was so nice of her to come talk with me and it really put me at ease. The similarities that we had were crazy. She has the same exact heart disease that I do, she had an ICD , and a lot of the same problems that I am having now. The only difference is that she does not have the antibody complication like I do.
It is a scary thing when you feel like no one can relate to you, and even though my family tries they will never know what I feel. She however knew exactly and it was the most amazing experience to relate like that and feel the joy she and her family had. This is what it all comes down to. Hearing her say how great she feels and how relieved and happy her family was just made my heart smile. Her dad even gave me a hug and told me good luck which made me almost cry. It's funny how my heart disease has brought on some of the worst moments in life and how I fear so much of the unknown. But then they have also brought me so much love, kindness and so many relationships that just make me feel undeserving of it all.
Saturday morning the doctors came and and wrote my scripts and signed my discharge papers. With the following orders. Increase my diuretic medication (toresimide), come back in one month for a check up, keep phone on me at all times and have my bad packed for the day they call me and tell me they have a match, and to take make sure I know how to get to the nearest airport which is in Manassas, VA.
Sunday we flew home and so far I have been feeling pretty darn good. I have had two bad days but that is a blessing when before I was having 5 out of 7 days being bad. I am now just anxious for the call. I have probably packed, unpacked and packed again my Cleveland bag. I want to make sure I have everything I need and always think of more stuff I might need or want. I'm Ready!
Next appointment is March 4th so I will be updating you all again soon :)
It is a scary thing when you feel like no one can relate to you, and even though my family tries they will never know what I feel. She however knew exactly and it was the most amazing experience to relate like that and feel the joy she and her family had. This is what it all comes down to. Hearing her say how great she feels and how relieved and happy her family was just made my heart smile. Her dad even gave me a hug and told me good luck which made me almost cry. It's funny how my heart disease has brought on some of the worst moments in life and how I fear so much of the unknown. But then they have also brought me so much love, kindness and so many relationships that just make me feel undeserving of it all.
Saturday morning the doctors came and and wrote my scripts and signed my discharge papers. With the following orders. Increase my diuretic medication (toresimide), come back in one month for a check up, keep phone on me at all times and have my bad packed for the day they call me and tell me they have a match, and to take make sure I know how to get to the nearest airport which is in Manassas, VA.
Sunday we flew home and so far I have been feeling pretty darn good. I have had two bad days but that is a blessing when before I was having 5 out of 7 days being bad. I am now just anxious for the call. I have probably packed, unpacked and packed again my Cleveland bag. I want to make sure I have everything I need and always think of more stuff I might need or want. I'm Ready!
Friday, February 8, 2013
Feb appointment part 4
Thursday night was a little eventful. I stood up to get on the scale and the next thing I know I was lying on the bed and a bunch of people surrounding me. I was told I had passed out and that I needed to make sure I sit up for a few minutes let the blood and oxygen get to my head and then try and stand up. They also said that I was not drinking enough so I really have to make sure I am getting the full two liters of fluids in since I am on such a high dose of diuretics. After that episode I was not allowed to get up so I decided sleep was the best choice.
Friday- Doctor Lee came around and told me he had spoke with Doctor Mountis and they had decided to let me go home. I have lost 6 liters of fluid all together and they were happy with my progress. I also got the official word that I am a status 1B. I had been waiting for the board to come back with their decision on if I qualified to be upgraded on the list. So goodbye to status 2 and hello 1B. This gives me a much greater chance to get a heart. In my blood category, I am A+, there is one 1A and 6 1B waiting for a heart. But because I have a smaller body frame I am technically a little higher because the ones on the list who are heavier have to receive a heart from a heavier person as well. So we were told to have our bags packed and ready to go in a moments notice. We have found the airport that the Cleveland Jet can fly into and they staff have briefed me on what to expect on the flight back to Cleveland. Meanwhile Dewon says he will probably be giving me anxiety medication the whole way there because I will probably be freaking out. When it come down to it I am so excited, I have been struggling my who life and have been on the list for so long that I finally feel like I am progressing and moving forward. We will also try to set up with Inova Fairfax to start my plasma floresis. Hopefully they can do it there so I can continue to stay at home and wait for the heart. If not we will have to stay in Cleveland.
Lots of exciting and scary news to process so I am going to talk with my family and get everything set up for the big day.I am just thanking God and leaving it all in his hands. Prayers Please!!!!!
Friday- Doctor Lee came around and told me he had spoke with Doctor Mountis and they had decided to let me go home. I have lost 6 liters of fluid all together and they were happy with my progress. I also got the official word that I am a status 1B. I had been waiting for the board to come back with their decision on if I qualified to be upgraded on the list. So goodbye to status 2 and hello 1B. This gives me a much greater chance to get a heart. In my blood category, I am A+, there is one 1A and 6 1B waiting for a heart. But because I have a smaller body frame I am technically a little higher because the ones on the list who are heavier have to receive a heart from a heavier person as well. So we were told to have our bags packed and ready to go in a moments notice. We have found the airport that the Cleveland Jet can fly into and they staff have briefed me on what to expect on the flight back to Cleveland. Meanwhile Dewon says he will probably be giving me anxiety medication the whole way there because I will probably be freaking out. When it come down to it I am so excited, I have been struggling my who life and have been on the list for so long that I finally feel like I am progressing and moving forward. We will also try to set up with Inova Fairfax to start my plasma floresis. Hopefully they can do it there so I can continue to stay at home and wait for the heart. If not we will have to stay in Cleveland.
Lots of exciting and scary news to process so I am going to talk with my family and get everything set up for the big day.I am just thanking God and leaving it all in his hands. Prayers Please!!!!!
Thursday, February 7, 2013
Feb appointment part 3
Wednesday night I had a weird rhythm and some chest pain that followed. When I called the nurse everyone started freaking out and they called the response team, meanwhile Dewon went to the ice machine and got me ice water to stick my face in. While the nurses and doctors were freaking out Dewon got me settled and with the help of placing my face in the icy water my arrhythmia went away. By the time the response team got there they had nothing to really do and I guess the head guy was mad and was telling me I had the arrhythmia because of anxiety. So after I told him how I felt about that (it was not nice) he left. There are a lot of things I don't know but one thing I have become an expert on is my heart rates. I can tell you if its fast, slow, skips a beat, anything. After I calmed down I ate a late snack and went to bed. Since I have to be NPO (no food or liquid) after 12 am I always eat a snack my favorite is hot Cheetos :)
Thursday- I woke up bright and early. The night before I had to wear a pulse oximeter to see if my breathing fluctuates as I slept. Hopefully I should know those results on Monday. At 9 am I went down for my heat cath. The doctor who did my consent didn't want to give me Ativan (anxiety medication) so when I went down to have the procedure the nurses could tell. So after a kiss goodbye from Dewon they got me back to the room. Then quickly gave me some versed and started the procedure. I guess I was a great patient this time because before I could ask any questions it was over and they were taking the swan out of my neck. When I got back up to the room Dr. Lee was there and he said that there was no significant change in my pressures but there was more fluid on my heart. He also said they had not heard back about my status change with unos and that he was going to discuss with Doctor Mountis about starting the plasma floresis to clean my blood of the antibodies. He said he would come back and tell me what they had decided but he never did.
I also spoke with a transplant patient who had the plasma floresis and she said it was very easy. You sit for three hours and while the machine cleans your blood. She said she had no side effects besides being tired after and that if she did not eat before the procedure she would get nauseous. So that helped ease my mind about the whole situation.
The Psychiatrist for transplant also came to check in on us and explained what would happen post transplant and answered some questions that we had. She is going to set up so I can talk to two ladies who just had a transplant in the last month so that they can explain what I will be going through in the early stages of transplant and what to expect.
Now Dewon and I are watching TV shows and trying to relax, I finally feel better so we did go on a short walk to get me out of the room. But I am still very tired so I am off to bed. Keep the prayers coming. Thank you all!
And don't forget Congenital Heart Disease Awareness Week starts today.
Thursday- I woke up bright and early. The night before I had to wear a pulse oximeter to see if my breathing fluctuates as I slept. Hopefully I should know those results on Monday. At 9 am I went down for my heat cath. The doctor who did my consent didn't want to give me Ativan (anxiety medication) so when I went down to have the procedure the nurses could tell. So after a kiss goodbye from Dewon they got me back to the room. Then quickly gave me some versed and started the procedure. I guess I was a great patient this time because before I could ask any questions it was over and they were taking the swan out of my neck. When I got back up to the room Dr. Lee was there and he said that there was no significant change in my pressures but there was more fluid on my heart. He also said they had not heard back about my status change with unos and that he was going to discuss with Doctor Mountis about starting the plasma floresis to clean my blood of the antibodies. He said he would come back and tell me what they had decided but he never did.
I also spoke with a transplant patient who had the plasma floresis and she said it was very easy. You sit for three hours and while the machine cleans your blood. She said she had no side effects besides being tired after and that if she did not eat before the procedure she would get nauseous. So that helped ease my mind about the whole situation.
The Psychiatrist for transplant also came to check in on us and explained what would happen post transplant and answered some questions that we had. She is going to set up so I can talk to two ladies who just had a transplant in the last month so that they can explain what I will be going through in the early stages of transplant and what to expect.
Now Dewon and I are watching TV shows and trying to relax, I finally feel better so we did go on a short walk to get me out of the room. But I am still very tired so I am off to bed. Keep the prayers coming. Thank you all!
And don't forget Congenital Heart Disease Awareness Week starts today.
Wednesday, February 6, 2013
February 2013 part 2
Tuesday- I had a horrible time trying to sleep. I was so physically drained and restless that I could not fall asleep and just broke down. So the doctors gave me some ambien and shortly after I had a great nights sleep. Although I was rudely awakened at 4:30 am for a lab draw. Then followed by an x-ray and an echo. The echo was neat because they injected me with a dye so that my heart would grow in the pictures. It was extraordinary. In the afternoon they took me to get a device check. If you know me you know that I hate device checks, the feeling is terrible but I did very well this time, no crying and I let them test all three leads. The rest of the night was pretty calm. No chest pain, even when I walked around, and I even got to take a bath. We watched some movies and Dewon cuddled with me, he really is an amazing man, I am so very lucky!
Wednesday- Another early morning lab draw followed by the cardiology fellow coming in to tell me I had lost some weight and was looking ten times better than when I got admitted. They are going to continue the lasix for another day and then try and get me scheduled for a cath tomorrow. So after the cath I will know what they are going to do with me long term. I also had a visit from two men who had already had transplants. Hearing their stories makes me a little more nervous. Neither one had a transplant until they were a 1A status and were both coding and basically dying. One of the guys said his ejection fraction, which is how your heart is squeezing/functioning was only a 3 before transplant. Well mine is 22 so I guess I have a little ways to go...Plus I thought I was already doing terrible due to loosing my independence, being tired and hurt all time. To realize most people are 100 times worse and dying before they are found a heart is not something I am looking forward to. They also stated I have to be mentally prepared for everything I am going to go through, that the transplant fixes one big problem but after there are other problems that come along with the new heart. I think I am am prepared but who really knows. Mentally, I am not going to lie I have bad days when I cry and am so utterly pissed that I am sick. Which according to my grandma I am allowed to have 3 "I feel sorry for my self" days a year. Then other days I am so excited to be able receive a new heart and start a new life that the bad days are just an obstacle. Plus its exciting to think one day I will be healthy enough to be able to chase after our kids makes everything worth fighting for. So all the small things in life like childish petty women, not being able to walk in the grocery store and not being able to drink aren't even worth my time. The things that make me who I am are my family, friends and the wonderful team who took my transplant case three years ago. For that I am truly grateful and know that I will get through this whole thing as a healthy, happier and more humbled person. That's what life is about!
The doctor came in as I was writing this and talked us. He said that they had submitted the paper work for me to be moved up on the list to a 1B YAY!! and they were also seriously considering starting me on the transfusions to help remove the antibodies in my blood so that I would have a better chance of getting a heart and not having instant rejection. So if I get approved to be a 1B and they get my antibodies down I could even get a heart this admission, that's mind blowing! Still this is all in the first stages so who really knows until it happens. One thing that is set in stone is I will be going to the cath lab tomorrow for the heart cath.
So prayer prayer prayers please. A lot going on and a lot to look forward to :) Thank You!
Wednesday- Another early morning lab draw followed by the cardiology fellow coming in to tell me I had lost some weight and was looking ten times better than when I got admitted. They are going to continue the lasix for another day and then try and get me scheduled for a cath tomorrow. So after the cath I will know what they are going to do with me long term. I also had a visit from two men who had already had transplants. Hearing their stories makes me a little more nervous. Neither one had a transplant until they were a 1A status and were both coding and basically dying. One of the guys said his ejection fraction, which is how your heart is squeezing/functioning was only a 3 before transplant. Well mine is 22 so I guess I have a little ways to go...Plus I thought I was already doing terrible due to loosing my independence, being tired and hurt all time. To realize most people are 100 times worse and dying before they are found a heart is not something I am looking forward to. They also stated I have to be mentally prepared for everything I am going to go through, that the transplant fixes one big problem but after there are other problems that come along with the new heart. I think I am am prepared but who really knows. Mentally, I am not going to lie I have bad days when I cry and am so utterly pissed that I am sick. Which according to my grandma I am allowed to have 3 "I feel sorry for my self" days a year. Then other days I am so excited to be able receive a new heart and start a new life that the bad days are just an obstacle. Plus its exciting to think one day I will be healthy enough to be able to chase after our kids makes everything worth fighting for. So all the small things in life like childish petty women, not being able to walk in the grocery store and not being able to drink aren't even worth my time. The things that make me who I am are my family, friends and the wonderful team who took my transplant case three years ago. For that I am truly grateful and know that I will get through this whole thing as a healthy, happier and more humbled person. That's what life is about!
The doctor came in as I was writing this and talked us. He said that they had submitted the paper work for me to be moved up on the list to a 1B YAY!! and they were also seriously considering starting me on the transfusions to help remove the antibodies in my blood so that I would have a better chance of getting a heart and not having instant rejection. So if I get approved to be a 1B and they get my antibodies down I could even get a heart this admission, that's mind blowing! Still this is all in the first stages so who really knows until it happens. One thing that is set in stone is I will be going to the cath lab tomorrow for the heart cath.
So prayer prayer prayers please. A lot going on and a lot to look forward to :) Thank You!
Monday, February 4, 2013
February appointment 2013
I had a rough start on my way to Cleveland. Between the army not following through and our tickets not being paid for, then an hour delay and the cab driver taking off with Dewon not fully in the car. It was not the way I wanted to start the trip but we did make it safely to Cleveland so that is a plus. After a quick meal and some tv time we went to bed early, I was exhausted!
Monday- We started out with 6 am appointments. I had an eye appointment. Let me state that the Cole Eye Institue is amazing. It's a whole building just for eye exams, surgeries and lazer treatments. Although I did not like the tests. The optometrist scares me and I hate the drops and eye tests. I did however pass with flying colors besides the damage to my eye from my stroke. I have absolutely no right pereferial vision. The rest of the appointments flew by. I did stop to eat some eggs and fruit and then continued on to the transplant center. Dr Mountis was there and we sat down and talked. After a quick exam she stated that I had about 11 pounds of fluid that she wanted to try and get off. I really had not noticed I had got so big. Although I did know I was having a lot more issues. So I am admitted to the heart failure step down unit. They will give me a couple days of IV lasix and then either Thursday or Friday they will do a heart cath. Depending on what the cath reads depends on if I stay in hospital or go home again. She also said she was going to meet with the transplant board this week, I believe they meet on Wednesday and ask for me to be moved up on the transplant list to a 1B. This gives me a a much greater chance of getting a heart so that's exciting and a little scary all at the same time. It seems like Dr Mountis thinks I am getting real close to transplant time because she also is going to speak with the pediatric surgeon who will be assisting in my transplant to make sure everyone is on board and they have a good plan on what to do next with me to make sure I have a good healthy future.
So Dewon and I are relaxing, he is playing a game and I'm coloring, painting and trying not to be board. Meanwhile peeing like there is no tomorrow. I did have some chest pain tonight but with oxygen and some pain medication I am feeling better and ready for bed.
I ask for your prayer not just for Dewon and myself but also for the physicians.
A huge thank you to the Conley's who have taken on our fur babies and everyone who has called and text me. I love you all and am so thankful for your continued support and encouragement.
Monday- We started out with 6 am appointments. I had an eye appointment. Let me state that the Cole Eye Institue is amazing. It's a whole building just for eye exams, surgeries and lazer treatments. Although I did not like the tests. The optometrist scares me and I hate the drops and eye tests. I did however pass with flying colors besides the damage to my eye from my stroke. I have absolutely no right pereferial vision. The rest of the appointments flew by. I did stop to eat some eggs and fruit and then continued on to the transplant center. Dr Mountis was there and we sat down and talked. After a quick exam she stated that I had about 11 pounds of fluid that she wanted to try and get off. I really had not noticed I had got so big. Although I did know I was having a lot more issues. So I am admitted to the heart failure step down unit. They will give me a couple days of IV lasix and then either Thursday or Friday they will do a heart cath. Depending on what the cath reads depends on if I stay in hospital or go home again. She also said she was going to meet with the transplant board this week, I believe they meet on Wednesday and ask for me to be moved up on the transplant list to a 1B. This gives me a a much greater chance of getting a heart so that's exciting and a little scary all at the same time. It seems like Dr Mountis thinks I am getting real close to transplant time because she also is going to speak with the pediatric surgeon who will be assisting in my transplant to make sure everyone is on board and they have a good plan on what to do next with me to make sure I have a good healthy future.
So Dewon and I are relaxing, he is playing a game and I'm coloring, painting and trying not to be board. Meanwhile peeing like there is no tomorrow. I did have some chest pain tonight but with oxygen and some pain medication I am feeling better and ready for bed.
I ask for your prayer not just for Dewon and myself but also for the physicians.
A huge thank you to the Conley's who have taken on our fur babies and everyone who has called and text me. I love you all and am so thankful for your continued support and encouragement.
Thursday, January 24, 2013
Loss of Indpendence
In the last six months I have come to a realization that I am no longer independent. That I can no longer go where I want, feel free and not have to ask for anyone's help. I constantly feel bad for my friends and my poor husband who have to take care of me and I feel even worse when I have to cancel plans because I simply can't get out of the house. I spoke with my advocate ,but to me he is more like my sponsor like at an AA meeting. He has already been through a heart transplant and gives me advice and checks on me a few times every month and he says its normal and I am only going to get worse before things get better. But every time I hear those words I want to scream. I feel like I am already bad and I can't foresee it being any worse when I can no loner clean my house, climb a flight of stairs, walk in the grocery store or be intimate with my husband without me being doubled over in pain or can't breathe. I get so frustrated with myself but I know I can't really do anything about it. I think back when I was in high school and I pictured this life where Dewon and I would be married, have a big house with kids and me running off to the OR every day to assist with other heart patients just like me. Sadly I will never be able to fulfill some of those dreams. Having kids does sometimes make me upset but I know we will adopt one day and no matter what the child will be OURS. Not being able to have my RN and work on a cardiac floor like I always planned does make me really upset. You can ask my dad from the time I knew what a job was I wanted to be a cardiac nurse and help others and now that can never happen. I did however marry Dewon and well we live in a big house and instead of kids we have two crazy furbabies who keep me on my toes :). And although I have loss my independence I have strength and faith in its place. I know that I will always be humbled by the people who are there for me and so very thankful. I'll just leave it all in God's hands and cherish every moment I have good or bad.
Update:
I have a follow up with Inova Fairfax next Friday with Dr. Desai
We leave for Cleveland February 3rd, my appointments are the 4th and I will update if I get admitted or not the 5th. I want to ask for continues prayers please. Thank you! Also feel free to leave me a comment, I made the blog for support and to help others going through the same health issues.
Update:
I have a follow up with Inova Fairfax next Friday with Dr. Desai
We leave for Cleveland February 3rd, my appointments are the 4th and I will update if I get admitted or not the 5th. I want to ask for continues prayers please. Thank you! Also feel free to leave me a comment, I made the blog for support and to help others going through the same health issues.
Thursday, January 17, 2013
January Admission (Fairfax) 2013
All week I really was just not feeling well and having a lot of chest pain. The chest pain is not a new thing but having it hurt so bad that I am throwing up and having to take a lot of pain medication is. So Tuesday around noon I started not feeling well all of a sudden and the pain came on fast. I remember calling Dewon to tell him and somewhere between talking to him and lying down on the floor I passed out. I woke up later on the floor of the kitchen with Layla lying beside me barking. I guess she knows now when something is wrong because Dewon said he heard her start barking the minute I passed out. So after Dewon got home I laid down and took some pain medicine. Hour later my pain was still there and I was not able to relax enough to take a nap. Later that night I still had the pain and started throwing up. Everything that I ate and drank came right back up which was not good because I wanted to take more medication but knew I couldn't on an empty stomach. After an hour I decided enough was enough and went to the ER. This time went to the hospital in Farifax called Inova. My doctor had told me when I was there in Cleveland the last time they were really good and would know what to do with me. After a lot of nausea medication (zofran) they finally gave me some pain medication (morphine) because I couldn't bare the pain anymore. I hate taking the stuff because I get all crazy and feel like I am falling. It is not a fun experience but it does take the pain away. I was admitted that night.
The next morning I met Doctor Desai who is a transplant doctor at Inova. He and my transplant doctor are good friends and he was happy to take my case and work with Doctor Mountis in Cleveland. After we all talked he decided that I had some fluid on me and he wanted to give me IV lasix to get it off and manage my pain. The first few days at the hospital I had pain a lot and was pretty doped up. They talked about putting me on a medication called Ranexa to help my heart out and that would eliminate the pain as well. After considering that medication they decided to hold off on it until they spoke with my Electrophysiologist ( my pace maker doctor). The medication can change your heart rate so the doctors want to make sure it is not going to cause me more problems. After a few days of IV medication I lost a little over two liters of fluid (5 pounds) and felt much better. Plus my chest pain had stopped and I could function again. Happy with the results they let me go home on Thursday which was great because we got to celebrate our Anniversary.
I go back to see Dr. Desai in a week and I go to Cleveland on February 4th. At my Cleveland appointment they will do another heart cath and we will find out if I have to stay until transplant. So I am asking for prayers please. Although I am excited to get a new heart I am also nervous about staying and the whole transplant chi-bang. Thank You!
The next morning I met Doctor Desai who is a transplant doctor at Inova. He and my transplant doctor are good friends and he was happy to take my case and work with Doctor Mountis in Cleveland. After we all talked he decided that I had some fluid on me and he wanted to give me IV lasix to get it off and manage my pain. The first few days at the hospital I had pain a lot and was pretty doped up. They talked about putting me on a medication called Ranexa to help my heart out and that would eliminate the pain as well. After considering that medication they decided to hold off on it until they spoke with my Electrophysiologist ( my pace maker doctor). The medication can change your heart rate so the doctors want to make sure it is not going to cause me more problems. After a few days of IV medication I lost a little over two liters of fluid (5 pounds) and felt much better. Plus my chest pain had stopped and I could function again. Happy with the results they let me go home on Thursday which was great because we got to celebrate our Anniversary.
I go back to see Dr. Desai in a week and I go to Cleveland on February 4th. At my Cleveland appointment they will do another heart cath and we will find out if I have to stay until transplant. So I am asking for prayers please. Although I am excited to get a new heart I am also nervous about staying and the whole transplant chi-bang. Thank You!
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