Well, we have all our sons and nearly all their families with us to help us celebrate our 50th anniversary. It's wonderful and there's lots of laughter. They arn't letting Jim and I do anything. Everyone is enjoying the beach. I make at least one visit down as the trip back is a bit much and has to be paced. My feet and ankles have been swollen so I'm trying hard to forgo the sodium meals and eating salads. The kids are all great cooks as are their wives. Jim and I may cook on Thurs or Friday. Today my feet seem better. Think some of it was dependent edema from all the traveling to Rochester, etc.
Tonight we'll take a family picture on the beach. The weather so far has been great. Have been working on the walking with some success! This is a great way to celebrate the good news from Mayo and our upcoming 50th!
Had pulmonary function tests yesterday morning and then saw Dr Sorajja: Results:
1) No surgery at this time as mitral regurg is only mod.
2) Mitral valve is repairable! Yea! YEA!
3) I'm deconditioned! (Out of Shape) SURPRISE!
4) I can start an exercise walking program gradually as my body allows eventually working up to 7 days a week and possibly 30 minutes a day. ( Which means I should lose weight and make my heart work less, get more endorphins (?) and feel much better)
5) Don't need to return for check up until 6 months to 1 year ( I assume based on how my symptoms are, what Dr Seitz feels and how I feel)
6) I have (? mild) interstitial lung disease and my cardiologist is not sure how that plays into my symptoms, shortness of breath, fatigue, etc. I can see a pulmonologist at Mayo but not until Aug 30 so may possibly see one here in Fremont that Joaniie recommended.
Got to visit with a dear cousin and her two daughters before leaving Rochester. What a positive attitude. How wonderful to have such loving daughters to cook, clean and care for her and keep her laughing!
Got a dear letter from a HS classmate with similar struggles who keeps up a great fight! Way to Go! I'll write soon. Meanwhile you are ALL in my thoughts, and prayer and sent love!
Also spent wonderful time over the weekend with Jim's brothers and their wives and his niece from Montana. What a great visit! So lots of positive things happened!
Thanks everybody for your support, love and prayers!!!
Now must get ready to meet the kids at the beach and cclebrate 50 years of marriage! Has it really been that long? How lucky can I be? Have 2 days to turn this around... and am limited due to restrictions from the heart cath on Mon. More positive happy days ahead! Yea!
Had an 8:45 appointment today for a L heart cath which required several hours of IV hydration first. From my pre-op bed I could view the cross over St Mary's entrance. Got into the cath lab probably about 1:30 and the results once again were mod mitral regurgitation. After recovering, we met Dr Suri who was very nice. At the present time, he along with Dr Sorajja, the valve cardiologist, believe surgery is not necessary since the regurg is not severe! Great News! The downside is to explain my symptoms and extreme fatigue at times with shortness of breath that set in and increased since January...so tomorrow morning, about 8 we will go to the clinic and they will try to work me in for pulmonary function tests (originally scheduled for 2:30 PM)... and possibly another mtg with Dr Sorajja. I'm beginning to wonder if I've just gotten lazy. Will be anxious to rule out lung problems and then I probably will be working on an exercise and heart healthy program! Sounds good to me as I don't like living like this! Sure know I'm tired tonight. Am limited in activities for 3 days due to the cath. Poor Jim... he's such a sweetheart. With a lot of luck we'll head for home tomorrow night. The kids may get to the beach before we do... but we'll get there! Love to all and thanks for all your prayer and notes. They are working!
The Mayo Clinic is amazing! What a change in 50 years. Admission was streamlined as was everything else. Simply arrive at the correct desk at the appointed time, give them your Mayo Clinic #, name and birthday, have a seat and you are called within 5 minutes and having the test. Everyone is so friendly and professional. Even though the tests were simple, it did feel like a very looooong day. from 8 AM to return to our motel at 3:30. The longest was my echocardiogram. I didn't make it easy for the main technician because I kept throwing an irregular rhythm - mostly premature atrial contractions and they can't take pictures during them. Three people worked on it; each at separate times and it took 2 hours: two techs and a cardiologist. They did 3-dimensionals of the mitral valve and the cardiologist told me it was a mod.. to severe mitral regurgitation. They checked out my aorta for any aneursyms and also checked my pulmonary arteries . I found out I can't walk from the Hilton Bldg to the Gonda Bldg (a block underground subway lighted walk) without stopping for rest. After this short note, plan to take a nap... then have a nice supper at Michaels (old favorite haunt from Nursing School days still run by the same family). That is, we will if the storm lets up. There are flash flood watches and it is hailing.. pea-sized hail and torrents of rain! Oh! Another great find! The cafeteria has meals that are low sodium (both hot and boxed sandwich wraps and it is conveniently located. The motels provide shuttles to and from the Clinic and St. Mary's so there is no need to worry about parking! So Efficient! Tomorrow at 7:45 I have a consult with a cardiologist who specializes in valve disorders and learn the results of my tests and recommendations. Pray that only one valve is involved so the minimal invasive surgical repair is an option!.
Got lots of forms today to fill out before my visit to Mayo Clinic. That should speed up the process a lot!
Also my very computer savy daughter-in-law, Jen sent me info regarding Medicare reimbursement for minimally invasive surgery... especially the DaVinci... so I have put that back in the very back recesses of my mind or concerns.
The journal is working it's magic...lending me support from patients... thanks Jennifer... and friends alike! What a blessing it is turning out to be. God bless all heart valve patients, their surgeons, care-givers, families and friends!
Got my info yesterday and now have my schedule for next week. We will drive up on Wed afternoon. Jim's brother Bob and his wife Ramona have graciously offered their apartment to us in Adams, Jim's hometown. That is roughly a 30-35 minute drive to Rochester.
Very early Thursday, I report to the Hilton Bldg for a fasting blood draw,U/A, 9:30 Chest X-ray. Then I am off to the Gonda Bldg for a10:00 Electrocardiogram and later at 12:30 I have an Echocardiogram. I should be done about 2 PM that day. ( Since I just had a chest xray and thoracic and lumbar spine xrays Tues here in Fremont and will have the written report and disc, I plan to call the scheduling nurse and see if we can eliminate the chest xray.) That would give me time for a snack breakfast and I could take my ,menagerie of meds with food instead of earlier with nothing.
Friday, the alarm will have to go off even earlier as I have 7:45AM consultation with Dr. Paul Sarajja at the Gonda Bldg in the Valve Clinic. Nothing further is mentioned for Friday.
Monday I go to my Alma Mater, St. Mary's at 9AM for a Ct scn of the heart, abdomen and pelvis. Total time for that appointment is about 90 minutes... time to allow the dye to get through the body, etc.
Then in the afternoon at 2;30 I have my appointment with my cardiac surgeon, Dr. Rakeesh Suri and find out what type of surgery is appropriate for me... and if I am still a candidate for the minimally invasive robotic repair of my mitral valve. If I am still a candidate, they tell me it takes approximately 6-8 weeks to get on the schedule so I'm thinking mid to late Sept or after. Since our real 50th Anniversary is Oct 7th, I think I'll stay away from that date also. Our family is celebrating together in August however..... plans made llong before I knew I had this bum heart!
Yesterday was a great day! One of my former nursing colleagues from Midlands Choice drove down from Lincoln and we had lunch together. Hadn't seen her for probably 4-5 years. She was encouraging as she has had a 4 vessel bypass (without going on the bypass machine) and three stents since and is doing well. We then went to see mom. My bridge club, thanks to Sara Wulf met out at Nye Legacy so mother could play and she was having a blast! Playing well for 95! They plan to play out there every month! That will do much to lift mom's spirits! The nursing home had hired a photographer to take many "staged" pictures and they made sure to take theirs. Mind you, they didn't take Ruth and mine since we weren't playing bridge... and they even took the staged coffee cups away. I'll solve that next time. Mom played it to the hilt and posed like a queen!
So why am I typing this at 4:30 in the AM? Have been having rib pain... probably referred from my thoracic spine. Hits me after using R shoulder for ironing, etc. Trying to get it under control before the open heart surgery. One of my internal med doc tells me I don't need to worry, I won't feel this pain after the surgery. He's probably right. I intend to practice relaxing techniques.. if possible.
Have been looking over the hor d' ouerves for mom's 95th birthday party Aug 21s.. That is one day, I mau cheat slightly on the sodium restriction. Overall, I do very well minding it and it really helps! I sleep so much better.