This is part of the topic on Jan 19, when we host the third seminar together with Columbia presbyterian experts / do sign up!!
You can register on this site under the webinars tab
Listened to the third webinar. Again very informative. To answer your question above. My fear is not getting a transplant. I have had a dozen people step up to donate, only to find out they don’t qualify. I’ve only been on the list for a year, and I know some of you have been on for years. My fear is this the rest of my life.
@Tupast - it's natural to be a little 'fearful'. After all, transplantation is life altering! I was quite nervous about the process, and very anxious about the outcome. When I found out that I needed a heart, I was overwhelmed for sure. Although not easy by any means, I tried to focus on staying positive. It's a mental game too. I kept telling myself, 'my positive mind must dominate over my body".
You're not alone, just be aware that there will be ups and downs - you may also need to keep revising/adjusting your expectations along the way. Please don't hesitate to seek out professional help/counseling etc - sometimes we all need that kind of support.
I wish you the very best of luck as you prepare to receive and live your 2nd chance in life.
Take care. 👍
I knew I had polycystic kidneys when I was 28,my Dad died 3 years later from his kidneys.I didn’t plan on making it to 60.I had basically never took good care of mine,but it was still a shock when the nurse called and said my potassium was a little high and I should see a specialist.That was January 2019.They sent me for to domore blood work.I had no idea what a gfr was but mine was 18.So I tried another specialist but Covid was just starting and getting an appointment wasn’t easy.I met him once in person and he told me to quit eating bananas and oh which I had everyday.I used google to find foods I could eat.I got my gfr up to 25 in 6 months was mentally doing great.I had doc by phone every 3 months, I was all excited about my gfr rising.It didn’t impress him and said it will probably go back down.And he was right so a year goes by and I’ve been at 18 for 6 months.So the next call I asked him how to get on this list I see on the internet.He referred me to the closest.I’ve been probed through every hole on my body.I thought my gfr would go up with all the blood they take.I live in Florida and my sister from new Hampshire she came down to visit and I had finally got on the list 2 days earlier.While we we’re having a late lunch my coordinator from the transplant facility and she is forgien and hard to understand on the phone.Luckily my sister who has been a RN for 45 years was there,so the coordinator congratulated me on being on the list.Then she said I have worms and I was exposed to tv, I told her to talk to my sister and I don’t think I heard you right..After ruining a lunch on the beach,it’s took another month to go to infectious disease control,more blood work,more probing just in case.On my first visit to this facility,I returned home from 1 hour drive to be met buy 4 sheriffs called by this facility.I did finish all my testing and took the worm medicine so they are gone and I take isoniazid for 9 months for the TB.I couldn’t get a straight answer on wether or not I can have a transplant while on the medication.Luckily the pharmacist warned me about tyenol and my liver getting severely damaged.If anyone has had a transplant in Florida I could use a good referral.Thanks Don,haven’t given in yet
I found this webinar really hard to handle. The other webinars have been great but something about the topic of this one, and maybe where I am mentally right now and how my own body currently is, it was too much.
I think there’s a point where information and being informed can cross over into fear, and being too afraid of the what ifs. I feel like I didn’t have a ton of worries going into my transplant, and some of that was probably I kept myself in a bubble. Unless it applied to my own situation, I didn’t want to know. For the sake of my own mental health, I didn’t read a lot about potential complications, which some did end up happening and looking back I’m really glad I didn’t have that in my mind as a possibility before hand. I did the jump into the deep end transplant experience, and I don’t regret it. I didn’t worry as much as I just said “I’ll figure it out if it comes to that.” and for me that was the best thing I could have done.
also from the webinar I realized transplants in the US are VERY different than Canada and I’m really glad I didn’t have to navigate that system, and a lot of those worries addressed in the webinar didn’t exist simply because of my location
Whether or not I would wake up.
@AliEm14 what bothered you about the seminar? Was the factual nature of it / the numbers? The stats? I studied before I got my two transplants but similar to you, I avoided looking too much at averages since I didn’t want to consider mine as such! I wanted to believe I was going to survive and thrive and I still believe that helps me day to day
@Karin exactly! I knew if I wanted to focus on surviving, I couldn’t fill my head with averages and statistics. I still try to avoid looking at averages. So the fact that those averages and statistics were just thrown out there without much clarification bothered me. I’ve also learned I’m a very abstract thinker and if I’m presented with too many facts and statistics my brain can’t handle it. I know there are people out there who think like that, and this seminar was probably beneficial for them. But for my personality type, which is far more emotional, it was too much. It’s important to remember both parties exist and to appeal to all types of people when talking about transplant! My doctors were great at knowledge but I needed a more emotional, creative approach, which is harder to find in western medicine!