@gastrogirl

I am tired.. and I ramble when I am tired, but cannot see that changing in the near future.. so my apologies for rambling in advance.

I have not been to the Mayo Clinic since 2019. So things may have changed.

Things in our lives changed for sure.. I and my husband had to take care of my mama. She had another stroke after about a year and a half in our care and I was not able to take care of her anymore.. taking care of her took a toll on my body. I pushed my body to its limits. We put her in a nursing home / rehab facility early January of last year.. she was doing well with us visiting often.. then covid-19 hit in March and we could not visit her and she went downhill quickly. She had another small stroke in June. She passed last August of a major stroke.

I had thumb surgery last year... mama had landed on my thumb a couple of times when I broke her falls enough that she did not hurt herself badly. I had arthritis in my thumb pretty bad already, but it aggravated it more. Then my SI (sacroiliac) joint started giving me problems. Probably from taking care of her. I loved her so much in this life that the pain is worth it.

Next Tuesday... in my hometown... I will have SI joint fusion. Hopefully after recovery I can arrange to go to the Mayo clinic. I have achalasia, Barrett's esophagus and esophageal spasms... and still have pains in my upper abdomen and ribs. I have my esophagus dilated every 12-18 months. I am having more difficulty swallowing.. I don't want to wait much longer.. there is a danger of aspirating.

I first went to Mayo for abdominal surgery. 2013-2014-2015. .. yes, 3 surgeries there. My insides got rearranged in the surgeries and my local GI doctor does not feel comfortable doing the endoscopies.. he thinks I am better off with the care at Mayo Clinic.. I like honest doctors.

I had gastroparesis before these surgeries. I had to have a gastric bypass (2014) to repair a giant paraesophgeal hiatal hernia. .
only option left to fix it. So my stomach empties well most of time because of the rerouting.. still a bit slow. Now I deal with aphasia which I had with the gastroparesis but it was not very bad yet. With aphasia the sphincter does not open well to let food into my stomach .. it stacks in my esophagus. The dilations of the esophagus help.. . no cure as with gastroparesis... just options to help. There are surgeries to help, but the dilations are best choice for me rightl now.

I live in Albany Georgia. My husband usually helps me make the Mayo clinic appointment. I have a hard time hearing on the phone. Since it has been a bit since I went things may have changed. Usually after we call for an appointment the GI department calls and ask when a good time for me to come is... Then call me back to tell me how many days. The first time for the GI department they asked me if I could arrange to stay for an extra day in case another test was needed. My husband is retired Army and we have a travel trailer. So we stay at Mayport Naval Station. On down time we like watching the people fish at the jetty and watch the ships come and go. Sometimes we stay in one of their cabins or at their lodge. We usually go down on a Sunday and come back on a Sunday.. time away from home is a nice break for us. At the cabin or lodge we only stay a couple of days.

If you haven't heard from the Mayo Clinic call and ask to speak to someone in the departments you have appointments with. They may ask to call you back and if you have not heard back within a couple of days call again.

Advocate.. Advocate! .. speak up for yourself. If you have someone to go with you all the better. I am blessed to have a awesome husband that is always by my side helping. We write out questions and write the answers down during the appointments. Always have something to take notes with. If you do not understand what is being said during an appointment ask them to explain again.. I've told them to dumb it down for me. Sometimes they will use medical terms I am not familiar with. .. now they are very very familiar.

There is always someone nearby to answer questions on where to go and how to get there. The buildings connect. The first day you will usually start at the Davis Building.. but they will let you know in your itinerary where you go and how to prepare for your visit or test. Wear something comfortable. You may need a sweater in some areas of the buildings. I have a tote that I put my ipad and a shawl in... and water. I never have enough time to crochet there, but some take a craft along. I like to do my word puzzles and jigsaw puzzles in between appointments. I see the games better on my ipad than phone. I like to people watch if the games don't interest me.

I have not been interested in eating when I was at the Mayo Clinic... was on a feeding tube for a little over a year. My husband did not care for their food at the cafeteria. At least one day after appointments he would go to What-a Burger on the way back to camp. Most of the time he took snacks and glucerna with him... in my tote.. because he is diabetic ... and ate a meal when we got back to camp.

Again my apologies for rambling.

ZeeGee