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This and That and Talk - My Transplant
As our Mayo Connect community grows, I am constantly meeting organ transplant members on a wide variety of forums with a wide range of issues that are not directly transplant specific. However, because we are all transplant recipients, we have a special connection: a unique journey and best of all - a new life! We don't always need help or advice. Many times we just want to chat with someone like us! That is my purpose in starting This and That and Talk.
Drop in and say 'Hi'. You are welcome anytime.
What do you want t to talk about? What words can you offer to someone who is on the journey? Do you have any questions for another recipient?
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@rose999, I wish you success in your search for a diagnosis and treatment.
I would like to encourage you to make your 2nd opinion inquiries soon, while your strength and your health are favorable. I do not know what kind of a waiting period there is for your situation.
Do you have someone who will accompany you? It is helpful (and encouraged by Mayo) to bring along a companion as a second set of ears.
Let me know how I can be of support or if I can help you in any way as you move ahead.
Hugs,
Rosemary
@contentandwell, Thank you for sharing. I always appreciate, and look forward to your liver input! I think it is amazing how many different symptoms we experienced on the path to transplant. And also how many similarities, too.
That is a good question about biopsies! I never thought of that:-) I think that my liver was pretty much damaged throughout.
Being cold was also my fate pre-transplant. I remember the heated blankets- Heavenly!! ( Mayo Methodist 10-2 in Rochester has my vote for the best heated blankets ever! )
I was not able to get a good night sleep, either. I remember how much I wanted to sleep, how much I needed sleep! Thankfully that is now a distant memory.
Enjoy your day!
Rosemary
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1 Reaction@senior999 in addition to @2011panc reply - At the Gift of Life Housing, there is a free shuttle bus that picks up and drops off right at the door:-) Rosemary
Thank you. I just submitted my request on line with no preference. I needed that little push. I was going to put it off but I know that doesn’t help anything.
@rose999 Here's a hug for you. Keep in touch. Rosemary
I received the appt call this morning but was told the calendar was filled for the next 12 weeks and they weren’t booking past that. He told me call back in a week or two. He did say that Rochester was best for liver. My son is almost at his yr mark for his transplant. He is doing great. My brother who died in Sept had an autopsy for his undiagnosed liver disease but it hasn’t shown up yet. My 14 yr old grandson saw a GI specialist experienced in mitochondria and pancreas issues but couldn’t shed light on why he had two attacks in last 6 mos. So we have lots of questions but no answers. My doctor thinks they are all unrelated but 2017 was a problematic year. I appreciate your understanding and help. Hug back to you.
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1 Reaction@rosemarya Yes, thankfully now it is all history, particularly the lactulose! UGH. Typical symptoms, all of which I had are:
* Declining platelet count
* Hand tremors
* Recently diagnosed diabetes
* Cold
* Trouble sleeping leading to day naps
* Hand tremors
* and, the big one -- HE - confused, irrational, tired
My hands were really shaky, more at some times than others. That was diagnosed as "essential tremor" but since it is gone it was obviously from the cirrhosis. As I said, together these are all indicative of cirrhosis so I can't help but wonder why no one put 2 and 2 together sooner than they did, particularly after I started having HE episodes.
Loss of appetite is also a symptom but that was one I never had. I never lose my appetite which of course is why I got so heavy. So far I am keeping my weight down and hopefully I will continue to be able to.
JK
My physical therapist's mother had developed liver problems, curable, not cirrhosis, and is now in Dartmouth Hitchcock Hospital here in NH. Her PCP here in one of the local hospitals told her there was no urgency. She went to DH and yes, there was urgency. She has been in there since last week and will hopefully be discharged in a day or two. She will be changing PCPs. DH has outpatient facilities/doctors in Nashua, Manchester and Concord so she plans to find a doctor at one of their facilities. Another patient not adequately diagnosed by the PCPs around here. Thank goodness we have better options to turn to, even if they are less convenient. There are a few good doctors in NH, my neurologist is definitely one of them, but there sure are a lot who are not. I think in any profession that people tend to work up to those who are doing a good job and highly thought of. Obviously around here they don't have much to work up to.
JK
@senior999 - Hello! I am Kristin, one of the staff at the transplant clinic in Rochester, Minnesota. I am not sure who you spoke with, but I just checked with our liver team, and they are booking right now for around the end of March/beginning of April. You can contact them directly at 866-227-7501 for more details. If you are interested in the other sites, Arizona or Florida, I am happy to contact them to see when they have appointments available as well. Just let me know. Have a nice week!
-Kristin
That's interesting, because I messaged Friday for April and they told the furthest out they schedule is 3 months and that April was too far out. I'm going to wait until Monday and try again.