I lost a boyfriend but that was my own doing / I could not stay with him after he had seen me in three hospitals over one month, and I had been so weak and vulnerable over the totality of our relationship. When I finally had healed / I broke it off / I felt horrible and mean but I just could not look at him anymore - all I thought about was sickness and pain... I did only meet him two months prior to my pancreas and that period was full of waiting and planning ...

Today I had my retinal scanning (eye exam), and wow it is impressive how many gadgets those docs and technicians manage.

Regular vision check, OCT, field of vision, retinal photography etc etc.

It takes more than one hr of different tests (plus wait time for eyes to dilate) until you see the retinal doctor and he or she gathers all the information to share.

I had type 1 diabetes for 21 years before I got my pancreas transplant and my eyes were pretty damaged by that time. All the ups and downs of blood sugar and blood pressure caused the retinas to leak and bleed. Now, most of the back of my eyes is dead tissue that cannot bleed or leak, but also cannot see. I have a small area around the center for vision, the macula which is still healthy and for that I am grateful! On the vision test, with correction, I am still 20/20 if I look straight ahead.

But wow there is not much healthy tissue left after all the laser and the anti-veggie treatments. 2mm or so that I have to protect for the rest of my life.

Thus the 3/year retinal screening!

it is something about the eyes - someone once said that they feared losing their vision more than dying and I do understand that! Losing your independence and losing the appreciation of beauty and growth.

I dream of the day when retinal transplants are a reality!

Until then, screening and treatments are a must.

happening tomorrow (!) at 5pm eastern we’ll be hosting another webinar on preparing for a pancreatic transplant. From transplant drugs to living a healthy lifestyle, diet and exercise, rejection and complications we’re going to cover it all!

if you have any specific questions for our panelists drop them below and we can’t wait to see you there

These webinars, in partnership with Columbia, are a great opportunity to come and ask your questions, learn new information and hang out with some cool people. You can register via the webinars tab at the top of the page, and even if you can't make it live the recording will be available after to catch up on any info you may have missed, or just to watch it again and share with friends and family.

Can't wait to see you there!

I needed one because if hypoglycemia unawareness and brittle diabetes after all other treatments were exhausted.

What’s your story?

Now it’s a matter of quality of life and just trying to help. I am currently taking Viberzi to help slow down my digestion and prevent the running to the bathroom not to have an accident, but it doesn’t make any big changes.

So, do you have any recommendations? Have you tried something that made a difference? Who helped you the most? Any information is helpful! Thank you :)

Over the past week I have had classic high tac side effects such as headache, nausea and a foggy mind - I even threw up a few times. I think what triggered the higher levels was food poisoning from my first dinner out in a year!!! Gave me diarrhea and the tac levels increased I am sure...

I wish there were an at hone test so one could self regulate / I actually decreased my dose by 33 percent after the third day w terrible headache and nausea but maybe not reco to do without bloods!!