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Posts (2572)

10 hours ago · Still trying to decide on Mayo - I feel too sick to get well in Visiting Mayo Clinic

I understand. Here is my suggestion: You can post your question in that discussion. If you want to address it to a particular member, just include that person's @name (just like I did at beginning of this message to you) and they will receive an email notification informing them of the message.

11 hours ago · Still trying to decide on Mayo - I feel too sick to get well in Visiting Mayo Clinic

@backyarder1, I want to share a discussion with you. You are not alone with your concern about traveling alone.
Chronically Ill: Travelling by myself to Mayo Clinic FL first time


14 hours ago · Liver transplant: TIPS (transjugular intrahepatic portosystemic shunt) in Transplants

I am a transplant recipient, and I am enjoying a quality life since my own transplant. Organ transplant is a seriously complex surgery and it requires that patient and medical team work together both before and afterwards.
My suggestion for you is to find a doctor whom you trust and work with him concerning your current diagnosis, and your current health requirements. You must do your part by taking care of yourself according to those recommendations.

1 day ago · Adults On The Autism Spectrum in Mental Health

@sirgalahad, I want to drop in today, and say Hi. I hope that you are doing well. I felt the nudge to write to you this week (just now taking the time to do it) because I had coffee with a friend at our local coffee shop. And I was greeted by a former student, who is autistic. We hugged and shared memories, and it was as if time had disappeared for us. He was bigger, and even had a full beard! But he still gave me the biggest and best bear hug ever! – just as he did as a youngster.
Anyway, I thought of you, across the miles. I am smiling as I write this. I hope it brings a smile to your face too.

1 day ago · SARCOIDOSIS in Lung Health

@riverotter, I am just now seeing and reading your post. Thank you for reaching out in this discussion with your questions.
I see that @estrada53 has already responded with some expert knowledge from her own experience. I received my liver and kidney transplant at Mayo Rochester in 2009. I also love the outdoors and hiking. And I have a beautiful granddaughter to love and who blesses my life with her hugs.
How are you doing? Are you being considered for a transplant?

1 day ago · SARCOIDOSIS in Lung Health

@estrada53, Thank you for your kindly wishing me well. I am sorry for the delay. I am doing well. I do not have sarcoidosis, and I was taking Prednisone since my liver/kidney transplant since my transplant in 2009. It is my understanding that the prednisone helps a kidney long term, and since I had a simultaneous (both at same time, same surgery) transplant, that I was eligible to taper off the prednisone. I still take my other immunosuppressants. My asthma has been diagnosed as being exercise induced. Pulmimologist and cardiologist were part of the diagnosis. The high allergy conditions, humidity and increased activity are the culprits of this. They think that the low dose prednisone had been masking it since my transplant. It is interesting that I have always had a struggle to catch my breath and keep up for as long as I can remember, but just assumed it was due to not being in shape to hike. Happy ending is that my pulmonologist has been able to prescribe and help me to control it and now I need only allergy meds, and inhaler as needed. The only problem that I once
experienced has been a case of throat thrush (painful) after a trip and hiking at higher elevations in Rockies.

I hope that you are also doing well. I don't know if I have ever had an ACE level test, so I guess I don't need it. How often does your pulmonologist check it?

1 day ago · Post-Intensive Care Syndrome (PICS) - Let's talk in Intensive Care (ICU)

Thanks for sharing your update. You really got more than you had anticipated, even the 'cold' weather was unexpected. I am thankful that you are home now. I realize that the one step at a time phase is a real drudgery. I send you my hopes and prayers that the steps keep on moving on a level path.

I am all in favor of crying, too. Sad tears, frustrated tears, confused tears, and even an occasional happy tear that can will creep in now and then. Small moments of hope and happiness are worth looking for. I decided to write them down, so I could be reminded of them. My intent was to find one everyday. However, as time passed and I began looking, I found more and more 'blessing' moments especially in the tiny things that occurred. If you need a way get thru the drudgery, I offer keeping a blessing journal or a progress journal as a posibile diversion.

I love Colleen's crazy idea! I was teary eyed as I read about your experience. You are a blessing, by being you. Your energy is powerful.