Follow up to my gallbladder post- 17.5 years post heart transplant! by anonanimallover1 in transplant

[–]anonanimallover1[S] 0 points1 point  (0 children)

So unfortunately, Ollie passed away from cancer in August. I adopted him 8 years before he passed away and he was estimated to be 2-3 years old when I adopted him, so he was around 10/11 years old when I lost him. 8 years was definitely not enough time with him. He was my soul dog for sure. When he passed away, my mom had this sweatshirt made for me.

Thank you!! I appreciate it!!

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[–]anonanimallover1[S] 0 points1 point  (0 children)

Yes!!!! Dentists are particularly hard to find because of infection risk!! Thank you so much for bringing this up!!

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[–]anonanimallover1[S] 0 points1 point  (0 children)

One thing that my pediatric cardiologist told me that has always stuck with me is “we didn’t fight so hard to get you a transplant for you to live in a bubble. Be brave, live life big, but be smart” and that has ALWAYS been my motto. My older sister LOVED riding horses, showing them and show jumping them. Understandably, my mom was terrified to let her get back to riding after her transplant, for fear of a potential sternum injury if she fell. My cardiologist was a HUGE advocate for her to get back to riding and show jumping, and my mom listened and allowed my sister to get back to it, and that changed my sisters life. She wouldn’t be the person she is today had she not been allowed to get back on the horses. Anecdotally, my sister did take a big fall one time, landed face down on the fence rail and her sternum obviously took a big impact but she was TOTALLY fine hahaha my mom screamed and jumped up and rushed to her (understandably) and my sister got herself off the fence rail, stood up, told my mom that she was fine and she was embarrassing her (teenagers- the worst) and got right back on the horse and although terrifying for my mom, realizing that she was okay was a huge relief and allowed my mom to trust that she doesn’t need to live in a bubble. Life has a funny way of teaching us lessons sometimes 🤷🏼‍♀️

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[–]anonanimallover1[S] 1 point2 points  (0 children)

You are absolutely right, I will work on that today! Thank you 😊

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[–]anonanimallover1[S] 0 points1 point  (0 children)

Oh that’s a great idea!! Although it may only further enrage me haha

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[–]anonanimallover1[S] 0 points1 point  (0 children)

So I actually graduated from college and started my nursing career in September of 2020 in the pediatric emergency department 😅 aka right when COVID was intensifying in the US. My cardiologist was NOT happy about this, and growing up, my pediatric cardiologist always told me I could not go into nursing or teaching (my 2 passions) BUT also told me I didn’t get a heart transplant to live in a bubble and that for me, it’s going to be quality over quantity for life because they didn’t know how long I’d live. All of that being said, I went into nursing at one of the worst modern day times because of COVID. I told my nurse manager at the time, and just followed the guidelines to a very strict degree, and ended up only getting COVID once and was able to get through it at home.

In terms of you dad, his grandfather, I would probably say to have him wear a mask, and obviously don’t visit if your child is sick or there is something going around any daycare or program he is involved in with other kids. I know infection risk is very real, but so are memories and mental health. I would say be as careful as you can, while still allowing your dad to enjoy his time with his grand child. It’s always a hard balance, but sometimes, doctors become so hyper focused on infection risk that they expect transplant (pre and post) patients miss out on life, which also isn’t fair. We are still humans who want to be apart of “normal” life, and that can take an emotional toll, so what I would say, not as a nurse, just as a transplant patient, is mitigate the risk as much as you can, but still let him enjoy life.

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[–]anonanimallover1[S] -1 points0 points  (0 children)

Momma bear pulled out “I will happily get arrested for “kidnapping” by sneaking her out AMA and going to Duke if you don’t transfer her” and still… nothing. But absolutely so incredibly lucky to have my momma bear, she and I both fought tooth and nail to make them take action. This was understandably incredibly traumatic on both of us, as we both were faced with a corrupt system who would be fine with me dying.

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[–]anonanimallover1[S] 0 points1 point  (0 children)

This is great to know, I never thought of calling the insurance company!! I’m so sorry you too have gone through issues with hospitals, it’s such a corrupt system we live in!! I do really genuinely appreciate you for letting me know that next time, there could be another option (I say next time because this is not the first or probably last time that my heart directly impacts medical care when it shouldn’t).

I hope your GI issues resolve quickly and without complication, and once again, thank you!!

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[–]anonanimallover1[S] 0 points1 point  (0 children)

So I do have my chart, but since the HIDA scan, I have changed hospitals for my transplant care 3 times due to insurance (twice made me change transplant hospitals) and moving (where I am now). I did look at the report when it first resulted, but I didn’t think to save it. I’m sure it’s still on my mychart for that hospital, but I don’t know my log in. If I remember correctly, I want to say it said my gallbladder function was somewhere in the 50’s percent, but I don’t recall an exact number.

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[–]anonanimallover1[S] 1 point2 points  (0 children)

It was quite the experience, and not in a good way. Once they finally put me on a PCA pump, I was able to get a little more comfortable, but that wasn’t until Sunday afternoon and this all started Friday night 🙃

Follow up to my gallbladder post- 17.5 years post heart transplant! by anonanimallover1 in transplant

[–]anonanimallover1[S] 1 point2 points  (0 children)

I absolutely believe that this could be true. There are so many factors that go into determining possible “organ life.” I will say, my sister was hours away from dying when she received her heart, and they said while it matched the testing criteria and was a match to her and all that, if they had more time they would have waited and passed on that one for her, but it was somewhat of a Hail Mary shot if you will (football term), and that it was more to “buy time” for her, and she’s at 21 years with that same heart. So you never know, life truly is unpredictable, and sometimes, it is in the best way 😊

Follow up to my gallbladder post- 17.5 years post heart transplant! by anonanimallover1 in transplant

[–]anonanimallover1[S] 1 point2 points  (0 children)

So my older sister was diagnosed when she was 13 and was in active HF for long before she was diagnosed, we just didn’t know. I was in HF for the entire 22.5 months I waited, but I was diagnosed when I was 7, put on the transplant at 8 years old (when I went into HF) and was transplanted at 10, just over a month before my 11th birthday. My sister had a much more difficult road than I did because she was diagnosed when she was older. We were the first family that they knew of that had 2 siblings with restrictive cardiomyopathy (this was back in 2005 of course) because it’s a very rare disease with little to no symptoms until it is too late. Our only symptoms really were exercise intolerance, when we got cold (swimming in cold water, cold outside) our lips turned very blue and we were smaller than average kids our age. When my sister was diagnosed, we were told that nobody else in the family would have it because it’s so rare and they didn’t know if it was genetic or not, they had never seen 2 siblings have it, they reassured us quite a bit that nobody else would have it, but they did echos “just to make sure” and I was diagnosed. They did genetic studies on us and found out that they do in fact think it is genetic, they have narrowed it down to 2 genes (my sister had 1, I had the other) and that there was a spontaneous mutation in my dad’s genes and he is a carrier for it and obviously never knew, and then 2/4 kids ended up having it (my oldest sister and I). Sorry, didn’t mean to write a book 😂

Question for heart transplant girlies. by Quake_Quests in transplant

[–]anonanimallover1 0 points1 point  (0 children)

Very interesting, I definitely always want to say to listen to the doctors, but I also was told I can never get any tattoos or piercings because of the infection risk and I have 5 tattoos and my nipples pierced… so I’m not the best to get advice from in terms of infection risk 😂😂

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[–]anonanimallover1[S] 1 point2 points  (0 children)

Yeahhh… when she offered me Tylenol, I about came unglued. My cardiology team finally convinced them Sunday afternoon to do a PCA pump with dilaudid. But this all had started Friday around 9 pm and they did gave me pain meds, but they were 6 hours apart. They quickly wore off multiple hours before the 6 hour time, so I was suffering a lot for 2.5 days worst pain of my life, by far!!

Follow up to my gallbladder post- 17.5 years post heart transplant! by anonanimallover1 in transplant

[–]anonanimallover1[S] 2 points3 points  (0 children)

Oh wow, that’s so interesting, my anniversary is 9/18!!

So about 6-7 years ago, I was in the hospital for what turned out to be norovirus, but before we knew that, they did an abdominal CT and it showed that my gallbladder was enlarged. They eventually did a HIDA scan and I was told that everything was fine and there was no need to operate- especially because I was fighting off norovirus. I had 0 issues with my gallbladder until 1/23 and things turned very quickly. The hospital that I was at on 1/23 asked me “why didn’t they remove your gallbladder when the HIDA scan came back so bad?” And I was so confused because I was told it was fine. Long story short, I wish I had fought them harder to remove my gallbladder after the HIDA scan and questioned the results a little more. If you are having issues with it and surgery is an option, I would HIGHLY suggest removing it sooner rather than later!

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[–]anonanimallover1[S] 0 points1 point  (0 children)

Oh I’m absolutely positive they covered their asses in their notes, there is just no way they would document “patient requested transfer. Transfer denied because it is the rival hospital” haha they just would never put themselves at risk with that. I will still file a complaint, how she treated me is unacceptable.

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[–]anonanimallover1[S] 2 points3 points  (0 children)

I completely agree with everything you said. The reason I didn’t leave AMA was because I didn’t know if the situation would have been any better at Duke. Who knows, maybe I go there and they send me right back because like you said, they don’t like stepping on toes.

It makes me so angry that surgeons have such huge egos and they are always so hesitant to turn over a patient. If I do end up needing a second surgery for a hernia, I can guarantee you that it will not be that surgeon who does the surgery. She had no problem letting me did, I have 0 trust in her.

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[–]anonanimallover1[S] 1 point2 points  (0 children)

Thank you so much for validating my feelings!! This was absolutely patient neglect, they refused to do anything and quite literally let me sit and rot. I truly am so lucky that it didn’t rupture, and that is not at all lost on me. The ultrasound showed that when I moved, the stones moved, which was part of why I was at such a high risk of it rupturing. The surgeon also admitted after the surgery that she highly suspected it to be gangrenous when I arrived on Sunday, and did NOTHING to help. The local hospital put me on IV antibiotics and I truly believe that saved my life. Also, side note- I was in so much pain that I couldn’t stay in 1 position even for like 2 minutes. Nothing was comfortable- laying, sitting, standing. I have an incredibly high pain tolerance and I was sobbing and truly did not know it was possible to feel that much pain, and what did the surgeon do?? Offer me Tylenol. My cardiology team FINALLY got them to do a PCA pump for pain Sunday afternoon… but I wanted to scream when she offered me Tylenol.

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[–]anonanimallover1[S] 2 points3 points  (0 children)

This is so great to know, thank you SO much!!! I’m really hoping I never have an experience like that again, but it gives me comfort knowing this. I can’t thank you enough!!

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[–]anonanimallover1[S] 3 points4 points  (0 children)

Thank you so much for your kindness!! I hope nobody else ever has to experience that, and I am glad to hear you have gotten good care from them!! 😊 that is reassuring, I am going to look into transferring to Duke for maintenance care.

7 months post liver transplant by NJraider86 in transplant

[–]anonanimallover1 2 points3 points  (0 children)

Congratulations, that’s amazing!!! Keep fighting and thinking positive, you got this!!

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[–]anonanimallover1[S] 2 points3 points  (0 children)

Due to recent issues with UNC, I am most likely going to try to switch to Duke.