Maryellen's Posts

Thanks Adam, It has been extremely difficult to deal with to say the least and he has since had to retire early from NASA where he was working for 28 years, we were just not ready but we can't have him launching rockets when he can't see or they might end up in someones back yard. We try to keep laughter going but so far all the eye doctors are saying that because he had to wait to go back into surgery the second time until the "surgical team" was pulled back from their homes. His optic nerves were fried. We never imagined this could happen and actually no one has ever heard of this so it is very frightening to think no one might even be looking into a cure of some type. Bionic eyes? Physically he is doing well and getting around quite well but driving is totally out as is reading. We ordered a huge TV screen and computer monitor as he has a bit of peripheral vision but just wanted to to encourage some people that although it is not easy going through this surgery the body will get strong and the "blues will go away" He is my hero for how he has been dealing with all this. Surgery was May 15th so it is still pretty new. I think I will enjoy this site and be able to get good information. Oh he also now has some neuropathy in both his feet and I am wondering if anyone as experienced this either. On the lighter side the shield we purchased was the greatest tool in the world. None of the doctors or nurses in the Heart Unit have ever seen one before and I recently purchased this book and the heart shield for my brother who lives in CA. It is so helpful. Had I have been in my right mind while all this was going on I would have tried to share both the book an the shield with other patients. I am surprised doctors don't know about them and have some pamphlets in their offices. Thanks again. Off to go check on Jimmy, he is outdoors a bit too quiet. LOL ME

Wow Maryellen, so sorry to read about Jimmy's experience and yours as well since I'm sure this has not been easy for you either. I haven't had surgery yet, I'm still being monitored but surgery is inevitable so I am definitely going to remember yours and Jimmy's story so i can ask questions about this when it is my time for surgery. Best wishes to you both. Thank you for posting.

Karen Pineda Sorry I have been so long getting back to you and I hope everything is going wel for you. We are at month five months out of surgery. Physically he is doing very well and all those things in the beginning are no longer problems. He has lots of energy, is eating well and if it were not for the loss of sight he would have been back to work a few months ago. Loss of sight is very rare. The doctors on the Eastern Shore have only known of two cases the other one was worse than my husband Jimmy's he had to have a seeing eye dog. My husband does so many things from memory and thank goodness his mind is brilliant. It does get frustrating because he can't drive and but he can see bright colors and shapes. We are both so burnt out on doctors and have been up and down the Eastern shore. Who knows what the future will bring, maybe some kind of optic nerve replacements? I don't know but for anyone reading this it is so very rare that I am sure you have no need to worry. Right now we just try to stay positive and adjust to a new way of life. Might sound easy for me to say but it is hard to watch. We have good days and some bad days. He has had a grand baby girl he was able to see once before surgery and his grand baby boy is due any day now. He also got some nerve damage in his feet that is pretty painful but we think we know why all this happened. His hobbies are traveling (he loves to drive, reading, his computer, his family and gardening. We actually planted three raised gardens before his surgery and I tended to them until he was able to feel well enough to get out and about. He then started tending to them but he has to ask me which are weeds and such but could come in with a basket of tomatoes and zucchini or green beans. It is more by feel. We have decided that we are so blessed to have him her with his wonderful wit and sense of humor than to not have him with us. I have become the entire caretaker but am blessed with family, great friends and neighbors. Remember that this is something that really does not happen very often, in fact is indeed very rare so it is not something anyone on this site needs to really worry about. Happy he is physically doing well. It took us a bit longer because he was pretty down in the beginning so it slowed down his desire to get out there and do it. He can walk the dog each day and "Rocky" loves his walks. I hope this finds you doing well and healing quickly. Maryellen

Michael Poe ask Adam about the shield, it is offered in the back it is in the book "The Patient's Guide to Heart Valve Surgery. Page 151. They are about $50 but worth a million. All the doctors and nurses that treated my husband through his two stays at the hospital plus the ones in all the doctors offices had never seen the and were so intrigued. I am not sure if everyone on this sight has read the book. My husband being an avid reader read it three or four times before surgery and ordered the shield a few months before the actual surgery. I will see if I can find the site. Maryellen

Michael Poe Here is the site www.Incision Shield.com Both that and the book have been life savers for both of us. I re-read parts of the books to my husband when he is feeling a bit down or funky but we will make it through this and everyone reading this post please listen to the others posting as we are all kind of like one big family, when you go through this you can go through anything. My brother "Jimmy also" had surgery about a month and a half ago and I was talking him through some rough times the past few months. I bought him the book and the shield and he said they are getting him through it. His eyes were a little blurry after the surgery and after hearing about my Jimmy he was scared. I told him to pick up the book and where to look Lots of people get some blurry eyes after the surgery. It is okay we will make if by golly. lol Maryellen