Hey Everyone!!!
So first of all I want to apologize for the last post, I was having a moment of weakness. I know I'm never abandoned. I am surrounded by my lovely family, great friends, and concerned caregivers all the time! I'm so grateful for all of the support and love I have received! Thank-you so very much!
Alright, Tuesday I had a heart cath and an EGD. The heart cath went well but in order to coil off some of my collaterals (extra vessels) they had to go in through my neck and groin, that wasn't so fun lol. The EGD, showed that my varacies have gotten worse and I have an ulcer! Ugh!! No wonder my stomach hurts all the time! But now all of the testing is done and my results are being sent to other transplant programs around the country, I really hope someone out there can help me! Well, that's all the news I have right now, I hope you all have a fabulous day!
Saturday, June 28, 2014
Thursday, June 5, 2014
May 29th, 2014
As we go through life we tend to picture life's pivotal moments. Whether it be a milestone birthday, a graduation, or perhaps a wedding. Most pivotal moments are joyous occasions shared with those who matter most to us in the world. This was not one of those occasions. The only similarity is the fact that I was surrounded by some of the people who mean everything to me. The day May 29th, 2014 the time 9:23 a.m. The location outpatient Cardiology conference room at PCMC.
One of the transplant doctors sat at the head of the table, I sat two seats down to his right flanked by my parents. Across from my family and I sat a social worker and two nurses. Tears began streaming down my face as the doctor started his speech with . . ."We're very sorry but . . . . . . . ." It's just like the movies, it's never a good thing when they say that. I will always remember this as the day I was completely denied my transplants by the state of Utah. I have now been rejected by every single transplant program this state has to offer. It was a devastating blow. How does one come back after building up hope time and time again only to be rejected not once, not twice, but THREE times!!!! I feel so abandoned.
Like I've said so many times before there is now a new plan. I'm going to have more testing done and all of my results, and transplant evaluation stuff is going to be sent out to other programs in other states. They're pulling out the big guns now, we're talking Mayo Clinic, Cleavland Clinic, Stanford, and Texas Children's. Once again I'm asking for your prayers, this is it, this is all I have left to hope for, that someone somewhere can help me with my transplants!!!
I'm sorry this post is so short, I'll try to do better next time.
One of the transplant doctors sat at the head of the table, I sat two seats down to his right flanked by my parents. Across from my family and I sat a social worker and two nurses. Tears began streaming down my face as the doctor started his speech with . . ."We're very sorry but . . . . . . . ." It's just like the movies, it's never a good thing when they say that. I will always remember this as the day I was completely denied my transplants by the state of Utah. I have now been rejected by every single transplant program this state has to offer. It was a devastating blow. How does one come back after building up hope time and time again only to be rejected not once, not twice, but THREE times!!!! I feel so abandoned.
Like I've said so many times before there is now a new plan. I'm going to have more testing done and all of my results, and transplant evaluation stuff is going to be sent out to other programs in other states. They're pulling out the big guns now, we're talking Mayo Clinic, Cleavland Clinic, Stanford, and Texas Children's. Once again I'm asking for your prayers, this is it, this is all I have left to hope for, that someone somewhere can help me with my transplants!!!
I'm sorry this post is so short, I'll try to do better next time.
Sunday, May 11, 2014
A new and hopefully FINAL plan!!!
Hello my lovelies!! I know I have been terrible at updating this, so get ready for a long post! I was just reading through my old posts and I've realized I have a lot of gaps to fill. First off, I thankfully do not have Celiac disease!! WOO HOO!!!! Back in November when I was having all of the problems with my stomach I had gotten tested for Celiac, the blood test they draw only shows an allergy to something and an EGD is the only way they can diagnose it for certain. Well after I stopped taking the new medication they had prescribed me I felt a lot better, tried wheat again, and I was fine :). Yay!!!! So obviously the allergy was to the medication. Let's see what else . . . . . .Oh yes, I had also gone in to seek a second opinion on my case at IMC. Well to make an extremely long story short, they have rejected my case. I have to admit I was very disappointed I saw several specialists there, and they all seemed like they were on board, just to turn around and basically say they felt like they are not equipped to handle it. But on the plus side, at least they were honest about it. I much prefer them telling me they can't do it then just being treated like a guinea pig.
Sometimes I get PVC's in my heartbeats, the best way I can explain it is it feels like my heart occasionally skips a beat. I've had them before and they've never given me any trouble. During the last few days in March I started getting a really bad headache, I've had trouble with migraines in the past, so I didn't think anything of it until, every time my heart would "skip a beat" I got a really intense shooting pain in my head. After this had gone on for 3 days I decided to call my cardiologist. She had me come into the clinic and she said she didn't like the way I looked so she admitted to the hospital. At first they were afraid I had a brain bleed, since I'm on Coumadin (a medication that thins the blood and helps prevent clots). I had a CT of my brain and it came back normal. Then they did an echo and my heart function was unchanged from last time. It was decided that the pressures in my head are probably high so this will cause me to get headaches, nose bleeds, etc. I should probably explain that the last open heart surgery I had, the Fontan, requires "re-plumbing" of the heart. However, when the Fontan starts to fail all of your internal pressures go out of whack. Pretty much every pressure gets too high, pressures in your lungs, pressures in the portal vein (liver pressures), and apparently pressures in your head too! So unfortunately this is just part of my heart failure. They gave me some AWESOME pain medication and I got to go home the next day!
On April 26th my wicked awesome sister HEATHER FEATHER took me to the Britney Spears concert in Vegas!!!! It was so much fun!! I'm so grateful to have such amazing family and friends. I know this is going to be the most difficult challenge of my life, and I'm beyond thankful that I have such an amazing support system. From doctors appointments to hospital visits, to phone calls and just helping me get out of the house when it has been a rough day. You know who you are and I can't say thank-you enough!!!!! I love each and every one of you.
April 29th started out like any other day, I got up got ready for the day and went to work. About two hours into my shift I started to feel like I was going to pass out, I sat down and had some juice and I started to feel a little less light headed. Then all of a sudden I couldn't take any deep breaths, I was literally gasping for air. My co-workers sent me down to the ER, I was hooked up to the monitors and it was discovered that I was in SVT, which is a very fast heart arrhythmia. My heart was beating upwards of 155 beats per minute. I've had episodes before where my heart starts beating very fast but it has always been self terminating. However, things were different this time, after about an hour my heart rate was not slowing down, so they gave me an IV dose of Adenosine. Adenosine is an antidysrhythmic that is supposed to slow down your heart rate. I have never had this medication before but let me tell you it hurts!! After the doctor administers the medication you can feel this catch in your heart followed by a few seconds of intense chest and shoulder pain. Luckily it only lasts a few seconds, but it's a scary couple of seconds LOL!!! The first dose of Adenosine did not work so it was followed by a second dose, which still didn't work. So back to PCMC I went, to spend another night in the hospital. Luckily by the time I got there my heart had converted back to a regular sinus rhythm, which meant I didn't have to be cardioverted thankfully! The next day I was started on a new medication called Propanolol it's a beta blocker that makes it harder for my heart to go out of rhythm. After a couple of hours of observation to see how I would react with this new medication I got go home.
I met with a new gastroenterologist and liver transplant surgeon at PCMC on May 6th. The new plan is to hopefully have my heart and liver transplanted at Primary's. Which is really special to me, this is where my story began and this is hopefully where I will get my new beginning. Nothing is set in stone yet, but I'm really praying that this is where it will all happen, where everything will finally come full circle.
Thank-you all so much for reading! 'Til next time.
Sometimes I get PVC's in my heartbeats, the best way I can explain it is it feels like my heart occasionally skips a beat. I've had them before and they've never given me any trouble. During the last few days in March I started getting a really bad headache, I've had trouble with migraines in the past, so I didn't think anything of it until, every time my heart would "skip a beat" I got a really intense shooting pain in my head. After this had gone on for 3 days I decided to call my cardiologist. She had me come into the clinic and she said she didn't like the way I looked so she admitted to the hospital. At first they were afraid I had a brain bleed, since I'm on Coumadin (a medication that thins the blood and helps prevent clots). I had a CT of my brain and it came back normal. Then they did an echo and my heart function was unchanged from last time. It was decided that the pressures in my head are probably high so this will cause me to get headaches, nose bleeds, etc. I should probably explain that the last open heart surgery I had, the Fontan, requires "re-plumbing" of the heart. However, when the Fontan starts to fail all of your internal pressures go out of whack. Pretty much every pressure gets too high, pressures in your lungs, pressures in the portal vein (liver pressures), and apparently pressures in your head too! So unfortunately this is just part of my heart failure. They gave me some AWESOME pain medication and I got to go home the next day!
On April 26th my wicked awesome sister HEATHER FEATHER took me to the Britney Spears concert in Vegas!!!! It was so much fun!! I'm so grateful to have such amazing family and friends. I know this is going to be the most difficult challenge of my life, and I'm beyond thankful that I have such an amazing support system. From doctors appointments to hospital visits, to phone calls and just helping me get out of the house when it has been a rough day. You know who you are and I can't say thank-you enough!!!!! I love each and every one of you.
April 29th started out like any other day, I got up got ready for the day and went to work. About two hours into my shift I started to feel like I was going to pass out, I sat down and had some juice and I started to feel a little less light headed. Then all of a sudden I couldn't take any deep breaths, I was literally gasping for air. My co-workers sent me down to the ER, I was hooked up to the monitors and it was discovered that I was in SVT, which is a very fast heart arrhythmia. My heart was beating upwards of 155 beats per minute. I've had episodes before where my heart starts beating very fast but it has always been self terminating. However, things were different this time, after about an hour my heart rate was not slowing down, so they gave me an IV dose of Adenosine. Adenosine is an antidysrhythmic that is supposed to slow down your heart rate. I have never had this medication before but let me tell you it hurts!! After the doctor administers the medication you can feel this catch in your heart followed by a few seconds of intense chest and shoulder pain. Luckily it only lasts a few seconds, but it's a scary couple of seconds LOL!!! The first dose of Adenosine did not work so it was followed by a second dose, which still didn't work. So back to PCMC I went, to spend another night in the hospital. Luckily by the time I got there my heart had converted back to a regular sinus rhythm, which meant I didn't have to be cardioverted thankfully! The next day I was started on a new medication called Propanolol it's a beta blocker that makes it harder for my heart to go out of rhythm. After a couple of hours of observation to see how I would react with this new medication I got go home.
I met with a new gastroenterologist and liver transplant surgeon at PCMC on May 6th. The new plan is to hopefully have my heart and liver transplanted at Primary's. Which is really special to me, this is where my story began and this is hopefully where I will get my new beginning. Nothing is set in stone yet, but I'm really praying that this is where it will all happen, where everything will finally come full circle.
Thank-you all so much for reading! 'Til next time.
Monday, January 6, 2014
Still Waiting :)
Hey Everyone,
I hope you all had a wonderful Christmas and a happy New Year! I'm sorry about the lack of updates lately, but in all honesty there isn't much to tell. Everyone always says waiting is the hardest part, and they're absolutely right. But what they don't tell you is the waiting you have to do before you even get on "the list." I had no idea the evaluation process would talk this long. My cardiologist and a bunch of other surgeons, gastroenterologist, and the transplant team have been in meetings discussing my case. I hope they come up with some answers soon! In the mean time I'll just have to try to be more patient (yes. . .patience Iago (see Aladdin)).
If I remember correctly from my last post, I was waiting to have a consultation with a Cardiothoracic surgeon. I met with him in early December, and he is going to be working with my transplant Cardiologist to develop a plan. My hopes are high, he was educated at Georgetown and did his residency and fellowship at John's Hopkins. That's gotta be good! Right? Next I have to see a gastroenterologist to determine if I need a heart and liver transplant to just a heart transplant. I'm obviously hoping it's only the latter. So other than that there isn't much to tell. All I can do is keep waiting, remain positive, and keep living life!
When faced with an uncertain future one tends to do A LOT of thinking. I tend to contemplate what I should have done differently, what I wish I could go back and change. I know it's useless dwelling on the past. What's done is done. Which is why I've always loved the beginning of a new year, it's like a rebirth, a new beginning, a chance to start doing things differently. My advice to you? Live each day to the fullest, life is so precious and can change in a heart beat. Forgive, forgive, forgive. Is something really worth losing the love and friendship of someone forever? Don't hold grudges. Give everyone a second chance, they might surprise you! Do NOT judge (easier said then done) but try putting yourself in that persons situation/shoes instead. Embrace the mistakes you've made (wow, I really need to take my own advice, lol), They are what made you who you are today. And lastly love each other as our wonderful Savior loves us, there is no greater gift.
As always, thanks for reading! 'Till next time.
~Heidi~
I hope you all had a wonderful Christmas and a happy New Year! I'm sorry about the lack of updates lately, but in all honesty there isn't much to tell. Everyone always says waiting is the hardest part, and they're absolutely right. But what they don't tell you is the waiting you have to do before you even get on "the list." I had no idea the evaluation process would talk this long. My cardiologist and a bunch of other surgeons, gastroenterologist, and the transplant team have been in meetings discussing my case. I hope they come up with some answers soon! In the mean time I'll just have to try to be more patient (yes. . .patience Iago (see Aladdin)).
If I remember correctly from my last post, I was waiting to have a consultation with a Cardiothoracic surgeon. I met with him in early December, and he is going to be working with my transplant Cardiologist to develop a plan. My hopes are high, he was educated at Georgetown and did his residency and fellowship at John's Hopkins. That's gotta be good! Right? Next I have to see a gastroenterologist to determine if I need a heart and liver transplant to just a heart transplant. I'm obviously hoping it's only the latter. So other than that there isn't much to tell. All I can do is keep waiting, remain positive, and keep living life!
When faced with an uncertain future one tends to do A LOT of thinking. I tend to contemplate what I should have done differently, what I wish I could go back and change. I know it's useless dwelling on the past. What's done is done. Which is why I've always loved the beginning of a new year, it's like a rebirth, a new beginning, a chance to start doing things differently. My advice to you? Live each day to the fullest, life is so precious and can change in a heart beat. Forgive, forgive, forgive. Is something really worth losing the love and friendship of someone forever? Don't hold grudges. Give everyone a second chance, they might surprise you! Do NOT judge (easier said then done) but try putting yourself in that persons situation/shoes instead. Embrace the mistakes you've made (wow, I really need to take my own advice, lol), They are what made you who you are today. And lastly love each other as our wonderful Savior loves us, there is no greater gift.
As always, thanks for reading! 'Till next time.
~Heidi~
Saturday, November 16, 2013
A Quick Update
Hello Everyone!
Sorry it's taken be so long to post an update, but I finally got some more information today. I'll start with the good news first. A couple of weeks ago I had some blood drawn to see if my body had built up any antibodies to anything, the results came back as a zero! Which is great, this means it makes it a little easier to find a compatible heart, and my body won't reject it as easily. Now for the bad news, I've been having a lot of stomach problems the past 4 weeks. I could barely eat anything and I had a constant stomach ache and bloating. I went into the doctor and they are pretty sure I have Celiac disease (which means I can't eat wheat). The only way to know for sure is to do a biopsy through and EGD. So sometime in the near future I'll have to have another EGD done. It was also discovered that I was having a reaction to one of the new medications I was put on. In the mean time, I've stopped taking the medicine and I'm eating a wheat free diet, my stomach is slowly but surely starting to feel better.
I received a call from the transplant director at PCMC yesterday. She told me that the transplant team has met several times to discuss my case and due to the complexity of my heart defect she wants me to get a surgical consult at IMC. Apparently my case is very complex and I have several comorbidities due to my liver disease, and I have a complex anatomy (some of my internal organs are on the wrong side of my body). After considering all of these factors it was decided that I should seek a second opinion with the transplant team at IMC. I have an appointment in December to discuss my case with the surgeon over there. I'll keep you guys posted. But please please pray that this meeting goes well. If IMC cannot do the transplant I will most likely have to seek help out of state. Thanks so much for listening to me ramble.
'Til next time.
~Heidi~
Sorry it's taken be so long to post an update, but I finally got some more information today. I'll start with the good news first. A couple of weeks ago I had some blood drawn to see if my body had built up any antibodies to anything, the results came back as a zero! Which is great, this means it makes it a little easier to find a compatible heart, and my body won't reject it as easily. Now for the bad news, I've been having a lot of stomach problems the past 4 weeks. I could barely eat anything and I had a constant stomach ache and bloating. I went into the doctor and they are pretty sure I have Celiac disease (which means I can't eat wheat). The only way to know for sure is to do a biopsy through and EGD. So sometime in the near future I'll have to have another EGD done. It was also discovered that I was having a reaction to one of the new medications I was put on. In the mean time, I've stopped taking the medicine and I'm eating a wheat free diet, my stomach is slowly but surely starting to feel better.
I received a call from the transplant director at PCMC yesterday. She told me that the transplant team has met several times to discuss my case and due to the complexity of my heart defect she wants me to get a surgical consult at IMC. Apparently my case is very complex and I have several comorbidities due to my liver disease, and I have a complex anatomy (some of my internal organs are on the wrong side of my body). After considering all of these factors it was decided that I should seek a second opinion with the transplant team at IMC. I have an appointment in December to discuss my case with the surgeon over there. I'll keep you guys posted. But please please pray that this meeting goes well. If IMC cannot do the transplant I will most likely have to seek help out of state. Thanks so much for listening to me ramble.
'Til next time.
~Heidi~
Friday, November 1, 2013
October 30th 2013
Hello readers and welcome to my blog! I was born with a congenital heart defect that consists of an atrioventricular septal defect with transposition of the great arteries and pulmonary atresia. This kind of defect is commonly referred to as "half a heart." Throughout my life I have had many heart surgeries and heart catheters done to improve my condition. My first surgery, a Blalock-Taussig shunt, took place when I was three days old. At two years old I had a Glenn procedure, and at five years a Fontan procedure. Due to the complexity of these procedures I won't bore you with the details. After the Fontan procuedure I had a couple of complications which consisted of fluid build up in my pericardium and multiple re-admissions for pneumonia.
For the last 19 years I have been extremely blessed and fortunate to have had good health and live a realaitively normal life! This past year I have noticed a decrease in my exercise tolerance and increased swelling in my legs. My oxygen saturation has also declined. I've also started to experience cardiac related liver cirrhosis. This happens when the blood from your heart backs up onto the liver causing damage. Earlier this summer my terrific doctors (seriously they're the best) at Primary Children's Medical Center; suggested a possible Fontan revision to improve the blood flow in my heart and decrease the pressure against my liver. Unfortunately after further review it was decided the risk of the surgery would outweigh the benefits.
I'm now going through the steps to get listed for a heart transplant. I still can't believe it. It's been quite a shock since my cardiologist suggested transplant would be the best route. I've always known I would need a transplant eventually, but nothing prepares you for the day your actually told. Anyways, this brings me to the creation of this blog. I'm going to write about this incredible journey in hopes that my story may help others going through the same thing. Thank-you so much for reading! 'Til next time.
For the last 19 years I have been extremely blessed and fortunate to have had good health and live a realaitively normal life! This past year I have noticed a decrease in my exercise tolerance and increased swelling in my legs. My oxygen saturation has also declined. I've also started to experience cardiac related liver cirrhosis. This happens when the blood from your heart backs up onto the liver causing damage. Earlier this summer my terrific doctors (seriously they're the best) at Primary Children's Medical Center; suggested a possible Fontan revision to improve the blood flow in my heart and decrease the pressure against my liver. Unfortunately after further review it was decided the risk of the surgery would outweigh the benefits.
I'm now going through the steps to get listed for a heart transplant. I still can't believe it. It's been quite a shock since my cardiologist suggested transplant would be the best route. I've always known I would need a transplant eventually, but nothing prepares you for the day your actually told. Anyways, this brings me to the creation of this blog. I'm going to write about this incredible journey in hopes that my story may help others going through the same thing. Thank-you so much for reading! 'Til next time.
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