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Posts (2351)

19 hours ago · Transplant Tourism - Patients Travel Around the U.S. for their Best Transplant Options in Transplant

I was waiting for a liver transplant in Kentucky at UK in 2008. Complications developed due to PSC (Primary Sclerosing Cholangitis) and my transplant team told me that I needed to be at the Mayo Clinic in Rochester to see a specialist there. However, I missed my appointment because of acute kidney failure and being in ICU. I was flown from Kentucky to Mayo on a frigid Friday night in February 2009.

I am forever grateful for the UK doctors who knew where I needed to be and made the decision to send me to Mayo, and for the doctors, in fact everybody, who took care of me at Mayo.
I received a simultaneous liver and kidney transplant in April 2009.
Rochester is almost like a 2nd home and I return annually.

23 hours ago · Dialysis in Kidney & Bladder

beach757, I just now read your post, So I am sorry for the late reply. How are you doing today? Did you get the port as planned?

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

Melissa I hated to leave the conversation the other day, but Oi needed to be somewhere away from my computer.
How are you and your mother doing?
I also want to ask how is your dad doing? He is the one that I can most relate to. I spent 5 days in ICU in Kentucky, and another 12 in critials conditiion at Mayo. For most of the first 10 days I have very little memory of what happened. Mostly random memories if events (sudden noises, being moved or lifted, needles and strange equipment, hushed voices/parts of conversations, faces that i still cannot identify, etc) After my hospital release while I was recovering, I asked my husband what had occurred during those 3 weeks. I remember how difficult it was for him to tell me about it. It was even more difficult because he and I had gone thru the same situation, but from different perspectives,. And it caused him much pain as I kept asking over and over again.
Have you considerd keeping a list of the events, the procedures, the people, the places tat your dad has had contact with during this time. If he ever asks, you will be able to provide him with it. A little peace of mind could be a huge gift for him.

1 day ago · Slow degradation of my vision. Seeing a retina specialist in Eye Conditions

I have been thinking of all of you and wondering how youy are getting on with your vision issues. Does anyone have an update?

Yesterday I had my routine appointment with my retina spcialist for my Lucentis injection. (#3 of a possible series of 4 injections for this round of treatments) The current plan is to spread out my injections with the goal or reducing flair ups for my BRVO (Branch Retinal Vein Occlusion). So my next visit will be in 10 weeks and include a full eye exam and scans. The results will determine if I get to skip an injection.
I know this is a chronic condition and the goal stop any progression of vision loss. I do have a donut shaped blind spot on the cemter vision of my right eye, and my left eye is compensating so that I hardly notice it. I am getting tired of this routine and the anticipation/anxiety that I experience before each visit.

I would appreciate any hearing from anyone about similar experiences. How do you stay strong? How do you cope with the 'dreaded' injection each time?

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

Melissa, You and your mother are to be commended for your determination in getting your dad to top level care. He is fortunate to have you at his side, and you and your mom are fortunate to have each other. That is a major blessing for you to be thankful for.
When I was transferred to ICU in an emergency situation, the medicl care team was focused on one thing only – to keep me alive. I was not even aware of all that was going on. My husband and sons, however, were living in each moment faced with strange medical equipment, medical terminology, and very real possibility of the dreaded outcome. It was hour-by-hour, day-by-day for them and it sounds to me like that is what you are going through now.
Now that he is moving out of ICU, talk to the doctor and the nurses. We found that by talking to my care team, and asking questions, that we were able to understand the whats and the whys of what was happening.
I'll be in touch later.

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

Welcome to the group, Melissa. I am happy to meet you. Can you share some information about what your dad is going through? What kind help can I help you with?

2 days ago · excessive mucus without cough in Lung Health

reddy @reddy, Welcome to Connect. Thank you for the greeting. I am not trained in anything medical, I only have my own experience to share with you. I am happy that you have already met @jenniferhunter who has shared her own experience, as well as some helpful suggestions that might give you some relief .
I also have been diagnosed with asthma that is triggered by seasonal allergies, warm weather and high humidity, and intense activity like fast walking or hiking. I try to avoid those trigger events as much as possible. My doctor has prscribed some allergy meds, that help during the allergy season.
One thing that I want to stress is to drink enough water to stay hydrated. This can help to loosen the phlegm.
If you are smoking, please quit because smoking has a big effect on our breathing. If it is discolored or if you are having breathing difficulties, I suggest that you check with a medical care provider. Is that something that you would be able to do? My decision to see a medical provider is when my symptoms interfere with my normal standard of daily living.

Keep in touch. I am intersted in hearing from you. I also am looking forward to what anyone else contributes to this conversation.