LadyCarrie Posted April 6, 2015 Report Share Posted April 6, 2015 Dear Anne, I didn't realize I was holding my breath when I first began to read this. Scanned first, then read. Now for a heartfelt, "Thank You, Lord, for answered prayers." Also now to intercom Jerry to let him know! He will be delighted. I will text Amberly at work. She will want to know also. Are you sure about the horse? That hurts my back just to think about it. Love and hugs, Carrie Link to comment Share on other sites More sharing options...
feralfae Posted April 6, 2015 Report Share Posted April 6, 2015 Oh, Anne! Brava! You finally got some information out of him, except that he still does not seem to have told you anything YOU might do to improve your test results, but you can probably find that on line. And you are teaching the doctors as you go, you great teacher you! I am just happy to learn that there is less to worry about now, and that soon you will have more answers. See fae doing a little Snoopy dance . fae Link to comment Share on other sites More sharing options...
LadyCarrie Posted April 6, 2015 Report Share Posted April 6, 2015 Anne, Now that I've got a grip and have talked with Jerry regarding your results, I want to shake your doctor. Amberly says that this is standard practice, but it's cruel. Until last year, we had a physician friend who would go "doctor-to-doctor" and get our results for us, but he died of pancreatic cancer not long after staying with me a few weeks in Modesto to give me transportation while Jerry was in the hospital. Amberly is a huge help also, but doesn't have the power of doctor-to-doctor. She used to work for that doctor, so she was telling the truth one time when she called the lab at the hospital for a verbal on her father when she said, "This is Amberly from Dr. R's office. I need a favor, please. You know how families are, and I have this one family asking really often for information. Can you help me out with this, for they're in my face." That was paraphrased, but you will understand. I should tell you that we were in a waiting area a few floors below her father's room when she called the lab. I was sitting right beside her, so I was definitely in her face. The lab was SO understanding of her being bugged by a pushy family, so were happy to accommodate her with Jerry's results. I feel no guilt. We felt a bit desperate, for Jerry had had a 9 1/2 hour heart surgery, and we were getting little information. Amberly could tell that story so much better than I, for she's a bit of a performer. Obviously. One of the nurses came out of OR during that surgery and discussed harvesting body parts with me while Jerry was on the table! That just about did me in. Carrie Link to comment Share on other sites More sharing options...
MartyT Posted April 7, 2015 Report Share Posted April 7, 2015 Link to comment Share on other sites More sharing options...
feralfae Posted April 7, 2015 Report Share Posted April 7, 2015 Marty, I was thinking about your dancing Snoopy, and how I wished you'd post it. GMTA Carrie,How terrible that they came to talk with you while Jerry was in surgery about a subject that would have had me thinking the worst was happening. How cruel and thoughtless, callous and insensitive of them! After Doug's last surgery, three different hospitalists came in to our room at different times to ask him about his paperwork for organ donations. After the first two, when the third one came in, I began pushing back, and after she left, one of the dear nurses came over and said, well, they did not have any real news for us, since we knew all the regular doctors, but this way, all three hospitalists could bill for visits. It was creepy. You have endured so much, and you carry on with such grace, love, and compassion. How wonderful to have you here with us, and Jerry and Amberly only a few electrons away. Yes, we need changes in our medical system: changes that will shift us back to a more patient-centered—as opposed to profit-centered—profession. Everyone should be able to make a decent living, and there are highs and lows within decent, but these days, it seems so very often that greed runs the machinery of medicine. Marty, just so happy you posted Snoopy. Thank you. *<twinkles>*fae Link to comment Share on other sites More sharing options...
MartyT Posted April 7, 2015 Report Share Posted April 7, 2015 ♥ Link to comment Share on other sites More sharing options...
kayc Posted April 7, 2015 Report Share Posted April 7, 2015 Anne, I find his delivery confusing and I can only imagine how exasperating this has all been to you, especially considering the length of time involved. There goes that patience/perseverance thing again, ugh! I admire your desire to get back on a horse, if that's what you want, I'm sure you'll accomplish it! I am relieved that they haven't found whatever horrible thing they were looking for. But it sounds like you have more waiting, I guess it's never ending, isn't it, as they're always looking for something. I guess that's why I'm taking a break from doctors, I just need it. I'll go again, when I'm ready. I don't need blood tests to tell me I know my health has improved, it has to have, considering all I am doing for it! But I still have my ulcers, and it bothers me increasingly more so, not sure why considering my diet. I suppose I need to repeat the dreaded treatment, but not being anxious to, I'll put it off until it annoys me enough. I hated the treatment! It's worse than the ulcers. Trouble is, ulcers can bother me forever, the treatment is just 2 1/2 weeks...but what a miserable 2 1/2 weeks! So Anne, off to the gym to get you in shape for a horse! I don't ride, but I sure do love horses, I pet them and bring them treats, scratch under their chins, talk to them. I wish I had the gumption to ride! I could have gotten free riding lessons from my friend but now that she's moved, I missed my opportunity, I'm afraid. I'm sorry I bent your ear with my day yesterday...yours was so much more important! Mine was just irritating fluff! Link to comment Share on other sites More sharing options...
enna Posted April 7, 2015 Author Report Share Posted April 7, 2015 Thank you for all your kind words. I am beginning to understand these specialists. It's like preparing cabbage rolls ~ you have to peel one leaf at a time to put the special ingredients in before you roll them. I have had many tests and soon I'll have an answer so I can begin to heal. My life needs to be about more than health issues. Fae, what does GMTA mean? I love the Snoopy dance. It makes me happy. You are such a dear soul. Carrie, I find strength in how you, Jerry and Amberly face each day. We all are indeed examples of endurance. Kay, my dear friend, I never tire of hearing how you are doing. You remain an inspiration to me. I know I'll never be able to ride a horse again but I like to dream. There are several stables here and I can always go and visit the horses. I still have a tennis racket hanging in the garage with the hope that I just may go over to the courts and play again ~ I am a dreamer. I wonder why we always think we are younger than we are! Kay, please do not ignore the ulcer problem. We are worth taking the best care of ourselves we can. Link to comment Share on other sites More sharing options...
MartyT Posted April 7, 2015 Report Share Posted April 7, 2015 GMTA = great minds think alike Link to comment Share on other sites More sharing options...
kayc Posted April 7, 2015 Report Share Posted April 7, 2015 Anne, it's not like I'm just ignoring the ulcer, but I'm not ready to go through that horrid treatment again, it's not that bad yet, if it reaches that point, I'll do it, but I'm eating so healthy and nothing I eat should be something that sets it off. Link to comment Share on other sites More sharing options...
Queeniemary Posted April 8, 2015 Report Share Posted April 8, 2015 Doctor's very often do not have a sense of humor....not sure why! I am glad that you kept on with him until he put the findings in language that you could understand!!Sounding better than we were afraid, right??QMary Link to comment Share on other sites More sharing options...
kayc Posted April 8, 2015 Report Share Posted April 8, 2015 Carrie, I missed your post where you told about Amberly calling the lab and about Jerry being on the table when they asked you about body parts. How insensitive of them! This is why they should ask us these things and have it on file BEFORE we're in the hospital! Good grief! Link to comment Share on other sites More sharing options...
LadyCarrie Posted April 8, 2015 Report Share Posted April 8, 2015 At the time, the only discussion I'd ever had about donating body parts was when they ask whether I have any to donate on my driver license, and I'd never heard of "harvesting" them from poor souls on the OR table. That word was just almost too much for me to handle. I couldn't talk about it. I couldn't talk at all. I left no bruising on him, and he didn't leave bleeding, so I was good. I was thankful that Amberly was with me. She had to educate me on hospital language after the nurse left. I did ask the nurse if it would be all right for me to wait in the little chapel located just right behind the chair where I was sitting. He said that I could, but I would miss the doctor for his report. Link to comment Share on other sites More sharing options...
kayc Posted April 9, 2015 Report Share Posted April 9, 2015 I think sometimes the medical community forgets they're dealing with people. Link to comment Share on other sites More sharing options...
enna Posted April 11, 2015 Author Report Share Posted April 11, 2015 Some days are like this ~ we all try to OWN THEM. Some days this IS moving forward. I have accepted that. Link to comment Share on other sites More sharing options...
kayc Posted April 11, 2015 Report Share Posted April 11, 2015 I love it! I think that's how I'm feeling today. I have to go someplace the next nine days and today I just want to collapse! Thanks, Anne! Link to comment Share on other sites More sharing options...
enna Posted April 12, 2015 Author Report Share Posted April 12, 2015 You are welcome, Kay. I hope you received the dragonfly I sent to you on FB. I know how much you and Fae love them. Today is a movie day for me. Sometimes I just have to take a day off. When life's events come crashing in it is good to step back and allow oneself to be where we are ~ today I needed to close myself off to everything, stay in PJs, eat ice cream (chocolate swirl with extra chocolate fudge sauce) for breakfast and indulge in truffles sent by my daughter as I am watching movies. So far I have watched Jersey Boys, A River Runs Through It, Steel Magnolias, and Dances With Wolves. I like to watch movies I've seen before. It is good to take care of ourselves without guilt. I am missing Jim bigtime. Link to comment Share on other sites More sharing options...
kayc Posted April 12, 2015 Report Share Posted April 12, 2015 I did receive it, thank you! It is the prettiest dragonfly I've ever seen! I like your choice in movies too. If I lived there you would have had to move over and share your popcorn chocolate with me. Link to comment Share on other sites More sharing options...
enna Posted April 16, 2015 Author Report Share Posted April 16, 2015 An update on my testing results without giving too much personal detail. After meeting with my urologist yesterday, it has been suggested that I will need to begin neuromodulation treatments that consist in a twelve-week nerve stimulation treatment to shock my bladder into acting the way it should be acting. The treatments will be once a week for twelve thirty-minute sessions. There will be a small needle placed near the tibial nerve and another small disc with wires placed on the bottom of my foot (I’m ticklish) that will send signals up to the bladder. Hopefully, the bladder will be retrained to do what it is suppose to do and will lose some if its “anger.” This least invasive treatment is called PTNS (Percutaneous tibial nerve stimulation) but it has only about a sixty-five percent success rate. If this conservative treatment does not work then on to plan B – a device will be implanted into the lower spine area and provide nerve stimulation to calm the bladder down. This procedure is called Sacral Modulation ~ whatever the heck that means! I won’t ask about that unless I need to know. I have a meeting with the spine surgeon and the urologist has already advised me that if the spine doctor thinks it best to go right to Plan B then that will be best. I have some serious problems with my spine. The big concern is nerve damage along the spine that could affect other organs in the body. I shall be backing off now about any health issues, but I did not want to leave this issue without explaining results of all the tests I’ve been through to those who had an interest. Link to comment Share on other sites More sharing options...
MartyT Posted April 16, 2015 Report Share Posted April 16, 2015 Good heavens, dear Anne ~ This all sounds very complicated and frankly, rather scary to me ~ I'm so sorry you're having to go through all this mysterious medical stuff. I do admire the approach you're taking, however ~ and your going for the most conservative, least invasive treatment first before you decide on something more extensive and dramatic. Spine surgery is very serious business, precisely because it houses your spinal cord. I just hope your spine surgeon doesn't advocate surgery as the first thing he (she?) recommends . . . Just know that we are with you throughout this long ordeal, dear heart, and pulling for you, and hoping for the best possible outcome! Link to comment Share on other sites More sharing options...
Wifflesnook Posted April 16, 2015 Report Share Posted April 16, 2015 Thank you for the update Anne. You sound so brave but you must be really worried and I'm thinking of you as you deal with this. We are all thinking of you. X Link to comment Share on other sites More sharing options...
kayc Posted April 16, 2015 Report Share Posted April 16, 2015 We're all pulling for you, Anne! Link to comment Share on other sites More sharing options...
enna Posted April 20, 2015 Author Report Share Posted April 20, 2015 Posting this here. Asking for prayers for my BIL I am asking for prayers for my BIL. He was taken to the hospital with fluid in his lungs and very ill. According to my niece he spent two weeks in bed without calling anyone before a neighbor called and stopped by to see him. When she saw what shape he was in she called an ambulance and called my niece. My BIL lives in SD and my niece lives in CO. He has lived alone since my sister died a few years ago from small cell carcinoma in the lungs. I am concerned that he just has lost the will to live. When I lost my sister it was very traumatic for all of us but especially for my BIL. My sister was a sensitive, caring person who adored her husband. She was his everything. They were two people who really did live as one. She was prone to upper respiratory infections and it wasn’t unusual for her to have pneumonia almost yearly so when she became sick that cold December her doctors thought it was pneumonia again and began a treatment of antibiotics. After several weeks, she was not getting better. A trip to the hospital and after tests the doctor went to her room to announce that she had a very progressive form of cancer in the lungs called small cell carcinoma. It was terminal and there was nothing they could do. The family prepared for her to be transferred to a hospice facility near their home and two days after she was settled in she died. This was so difficult on all of us, but my BIL just has not been able to wrap his mind around the fact that she is gone. I miss my sister more than words can tell and since the death of my Jim I do understand how my BIL could feel that his world is just gone. Please pray for our family. Link to comment Share on other sites More sharing options...
feralfae Posted April 20, 2015 Report Share Posted April 20, 2015 Dear Anne,I am keeping you, your BIL, and your family in prayer.Holding you in my heart,fae Link to comment Share on other sites More sharing options...
MartyT Posted April 20, 2015 Report Share Posted April 20, 2015 Oh Anne ~ I am so very sorry to learn this latest news, and my heart goes out to you and your family. Of course you are in our thoughts and prayers ~ and do keep us posted, as time permits Link to comment Share on other sites More sharing options...
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