iowagirl
Forum Replies Created
-
Posts
-
Jonathan, Having a similar problem with the main provider not submitting claims to the right company. I was forced onto Medicare in July (am 64, but have been on disability for two years, so had to take Medicare even though I was fine with staying with my expensive, but well-paying plan). Medicare rejects the claim because it is a Medicare Advantage plan (the only one you can get prtty much on disability) because the provider sends the claim to Medicare part A and B. I call the provider…..they see the problem….fix it and promise the rest of the claims as they appear will be sent to the right place….and…of course, they don’t, so we are going to have to go through each and every claim this way. I will have to deal with this situation until next April when I turn 65 and then at that point, I will be able to choose from any of the usual supplemental insurance plans. Sooooo, I’ m having to do the provider’s bookkeeping for them to keep things straight…..something I fortunately feel good enough to do right now, but it sure isn’t something I should HAVE to do.
I agree….your problem with that insurance are with the provider’s office, probably not the insurance company.
Lainy, Arizona probably not until winter, after the holidays if I can talk Tup into that long of a winter drive. (We try to avoid flying).
Debbie….yes, it will feel greata to be up and around again. In fact, this morning, I woke up feeling the best I’ve felt for a month. The coughing has subsided considerably and I no longer have to try to force the air out of my lungs to breathe. What a difference!!! My arm with the flu shot…..I had forgotten they put a bandaid on my arm…..and found it when I went to bed. When the bandaid was off for about a half hour, the throbbing and pain in the area pretty much stopped. It was apparently from my adhesive allergy and not so much the flu shot. I’m sure some was initially from the shot, but I won’t know how much of it was. I’ve had bandaids cause burning and throbbing before and it’s pretty severe.
So today…..I venture out by myself ….a little shopping for some cupboard organization and a haircut/color….(a little pampering goes a long way to adjust an attitude).
))Julie
Catherine….Thank you……I’m ready for those calmer days ahead that you mentioned. Haven’t seen any of them yet……but I know they’re out there and waiting for me. Dang it….I want my three months of calm!!! LOL Flu shot today…so arm hurts. I know it will pass and be a thing of the past too…..but gah….would have liked to have skipped it. That wouldn’t be prudent though. Glad y GP pushed me to get it done while I can…..who knows when something else might happen to keep me from getting it done?
Today IS a better day though……had a followup with my GP.
1. She actually heard the “cough” in person….and said….”That’s asthma.” Yup…that’s what I thought too. It’s improving, but slowly.
2. I described the belly pain incident that precipitated the second ER visit……words and hands….exactly as it happened. The Er had not conveyed that to her….so she was hearing it for the first time. She nodded and said it sounds exactly like a kidney stone….and explains so much.
3. Ears…..have a retracted right eardrum which explains the fuzzy and hard to hear on the right ear and another scratch in the left ear (apparently in my sleep, I guess) . The left is self-limiting….some ear drops will fix it pretty fast. The right ear…..use Flonase twice daily to try to keep things as open as possible…probably ANOTHER three weeks before it resolves.
4. Issues with the oncologist…..she said My thoughts about treatment were very reasonable and to keep doing what I was doing….and pushing to get what I want. (easier said than done, but we haven’t given up on forming that perfect team. I have an IR team in which I have total confidence and a surgeon who sees me as an individual patient and treats me that way. Now, just to put together the third leg and hope that I don’t have to use any of them, but if /when the ICC returns again……and if it is again operable or ablateable…..then we are set to go without having to fight to get what I want.Meanwhile……I am plannig daycations….and several day mini trips…..and a bigger driving trip later this fall. We will only have the baby (17 month) grandson two days a week from now on…..he’s in daycare the other 3 days and if I become sick , have a Mayo appt, or want to go on vacation, they will put him in the daycare for the full week from now on. It’s how we did it with the first grandson. So…..this fall……we’re going to cut loose and hit the road…..go visit people….see some country side. I’ve had my “tune up” and good to go until early December. LOL
Julie T.
Marion….that is weird about your husband’s kidney stone episode. It sounds so similar, doesn’t it.? Had he ever had a stone before? I wonder if it is from dehydration after surgery. I had a terrible time with getting enough to drink. My mouth was like glue from the stuff they give you during surgery to dry up secretions….took two full days to get it so I didn’t have to drink every 15 seconds so my lips and tongue wouldn’t stick….and then, it’s stayed like that until last night, despite drinking a decent amount of water. Weird that it would suddenly turn around AFTER a stone had passed. But, I don’t know how that all works. Today, my lips feel normal again…the cracked areas are gone…..rehydrated…even though they were cracked yesterday morning. Hopefully, this is a sign I’m on the mend again. This is the “ordinary” stuff that happens while you are sweating the big stuff. I kind of feel like I’m looking over my shoulder for what might be coming next……so am staying close to home for a couple days…..but trying to get through the mound of paperwork will keep me busy. After a couple days….I’m pronouncing myself healthy again…and moving on.
What else can happen? I did not report back as planned because …well…things happened.
Last Sunday night, the temp returned, but only into the mid 99 degree range. However, I’d been coughing almost non-stop (hard and non-productive) and dry heaving very frequently during the day and as it got to be about 8 p.m., I realized that I needed help. A call to my GP found that she was not on call….and I knew the guy on call (not in her practice) could never be up to speed on what all has gone on with me……so ….off to the ER we went…arrival…9 p.m. We got back home at 4 a.m. after going through blood and urine tests, a breathing treatment (helped a little) , a chest x ray (no pneumonia) and a special lung test (I am allergic to the CT Contrast dye so can not use a CT for this) to check for blood clots (no blood clots). The diagnosis: The blood test showed my creatinine was now up to 1.7 (it is usually about 1.2 or 1.3 (due to Gem/Cis damage) . YIKES! It isn’t good to be given a diagnosis of acute kidney injury. There were no infections to be found. So, basically, nothing to really do. The breathing treatment seem to help settle down the cough some……and I do have asthma. So, the next day (Monday), I called my GP who was now back on call. She already knew all about the ER visit, so I just had to fill in some facts from the overnight. Husband had remembered that I’d had a virus last year with a cough that lasted a couple months after the virus left. GP had given me an Asthmanex inhaler back then that worked like a charm. So I asked her if we could try using one of those again. She agreed….and danged if it didn’t start helping ….slowed the cough way down and almost all the dry heaving. Apparently, the dry heaving was an exaggerated gagging attempt to get my airways opened and air inside my lungs.
Fast forward to today: This morning we went out for breakfast….and an hour after we ate, I suddenly had some pretty bad aches in my abdomen. We left right away……and after getting into the car…the aches turned into serious repeated squeezing pain in my upper right abdominal quadrant…every 3-5 seconds. OMG……I didn’t think I could make it home. After we got home I laid down in bed…turned to my left side and the pain stopped. Heavenly relief! Still, I figured we ought to get this checked out…..called the GP….and drove off to the ER again. We spent another 4 hours down there….blood tests, urine tests and ultrasound of my organs. I found it interesting that I was told I didn’t have a gall bladder, when I absolutely do have one. They apparently got me mixed up with another patient next door who didn’t have one. GAH! The diagnosis: Gall bladder looked fine, no infections, creatinine had dropped to 1.3 (where it usually has been since chemo) , but there was blood in the urine. The presumptive diagnosis was that I had a small kidney stone that got stuck in a small tube and it broke loose after the 45 min of pain. It may or may not have been excreted yet, but they doubt it will cause any more trouble if it still has to finish passing through the urinary tract. It has to be small or apparently the pain woud have been far worse. YUCK!
So….just about the time I thought that I had gotten through another major procedure, the ablation, to kill the tumor, this every day stuff hits and blindsides me. Who would have thought? Just goes to show that in the midst of all things CC……we aren’t immune to every day illnesses . I was on the watch for complications from the microwave ablation…only to have more mundane things be the real trouble.
Right now…I feel just fine. Let’s hope it stays that way…..I do not want the trifecta of ER visits this week.
Satuday night…..chills and temp came back….upp to 101.9. So I called Mayo and discussed it. It turns out tha the post ablation flu like syndrome that happens to about 20 percent also sometimes has a delayed start. The guy I spoke to tonight thinks that is what is going on. However, it this continues another 24 hours, I am to call back. Meanwhile, he did not want me to go to the ER becuse it might precipitate an invasive procedure that isn’t necessary. So, I sti here quietly and try to relax and just go with it. He said also that the post ablation syndrome CAN go on for as long as 10 days. So much for me beating the 20% odds……but what else is new? I’ll report back again tomorrow.
Marion…and anyone else reading this who might be interested: I ended up have some chills last night in the early evening…and ran a small temp…100.2….and discomfort/pain started in the general area of the ablation. It hurt in the ablation area to breathe deeply or even just a burp would make it hurt. I got a pain in my shoulder as well, which was something they mentoned, but it was one kind of pain/ache and was gone. The discomfort in the ablation area continued overnight and it was difficult to lie in bed except flat on my back. I took Tylenol last night and again this morning…..and even though that has worn off, it has been feeling better….not totally good yet, but better. I’ve spent the day in the recliner…..not doing anything. Drives me crazy to just sit here…but will do it.
Julile
Yes…..for outliers on the bell curve, surch as myself, the localized treatments surch as repeated resection, ablation, etc, can definitely extrend life. The problem is getting oncologists on board for us patients who fall into that narrow catagory.
Yes, it was 60 days pretty much to hear back from SS about the acceptance they said, but it’s pretty much a formality once they see the medical work….a guaranteed acceptance, since the cancer diagnosis for CC is on their list of special diseases that don’t require the usualwaiting period. I think mine came through a little faster than the 60 days….but then you still have to wait for the first check to be distributed. So glad I did it.
I understand about your wife not wanting to go to an appointment and sit. At the time I went, I was two months past surgery and just before starting chemo and the blood clots. I wouldn’t have wanted to go sit at an appointment after that either.
I forgot to add that I was given a 10 day course of antibiotics to ward off a possible abscess in the liver as a result of the ablation. (This is part of the preventative treatment). The antibiotic is
cipro, which has a reputation for causing problems with ruptured tendons, etc. as well as a host of other nasty side effects. I was very hesitant to continue taking that particular drug when I found out exactlhy what it was, but I was being dismissed at the time and in line at the pharmacy. I don’t know if there is another drug they could use instead……we just left and I guess hoping for the best. I am going to talk with my GP about it on Monday and see if she can check into it for me. However, at that point, I will be half way through the treatment course of the antibiotic, so I don’t know if it will really do much good to change to something else at that point.Julie
Marion, Yes, I am going to take it easier for a while now that i am home. It was a 3-4 hour ride home with the stop for lunch, and then we went out for supper with friends. I am now very tired. I didn’t sleep all that well last night…..bed was a little on the hard side and I didn’t sleep much the night before going into the hospital because we had to be up at 4 a.m. to get to the hospital on time. Even though I have no pain, I can tell that my energy level was also zapped as well…..it doesn’t take much moving around to make me feel worn out. So, I shall cuddle in my jammies this evening and watch tv in bed after i finish my messages and get my meds. I’m ready to crash in my own bed.
))The microwave ablation of the 1.1cm tumor on Wednesday was very successful. The IR doctor exuded confidence and I just can’t say enough about the whole experience. After having two resections, from both of which I recovered relatively fast (4 days and 1 day) to be dismissed to go home, but with a healing period with pain management, with the ablation, I did not have any pain once I woke up from anessthesia and have not at this point, now two days out. They wanted me in the hospital overnight for observation and then released me Thursday late afternoon. We stayed in town Rochester to have dinner with a cousin who lives there and just chill out for a while before driving home today. I am to lay low for several days….nothing strenuous …no lifting more than a milk jug of weight. The actual incision looks more like a short little scratch…..no stitches….not even a bandaid now, .and I’m just not to submerge in water, but I can let water run over it in the shower for several more days until it heals. All I can say is that the whole experience was remarkable and nothing short of miraculous.
The MRI that was done as a follow up on Thursday morning showed that they did indeed get the entire tumor as well as a margin area around the tumor as planned. The whole procedure went so well that Dr. Smitz said it only took them two hours instead of the possible 3-4. The MRI didn’t show any other tumors on the horizon, so for now, I am NED (no evidence of disease) again.
FYI…ablation can be done on larger tumors as well…..though typically they say no larger than 3 cm, that is changing and larger ones are being done. There are times when surgery is still preferable, but when ablation is possible….oh my…..what a difference.
It feels very weird to be home…..to know the tumor is gone….and I don’t hurt somewhere. So, I collect my three months again until the next scans., probably in December. We still have to get our problems with the oncologists cleared up, but for now, it’s good to be home.
deadlift,
I actually made an appointment with a SS representative locally and spoke with him in person. It was far simpler. All I had to do is give him the name of my doctors and their contact info, my cancer diagnosis as well as any other major illnesses I think, and then he had a lot of basic question answer stuff. I signed something giving them permission to talk with my doctors, so I didn’t have to personally arrange for anything.
I can’t imagine that they need ALL medical records….but that’s where it was really handier to do this in person than on the website. There is probably some phone number you can call, or a place on the website with an email contact to ask this kind of question, but I can see it dragging out. Mine was started late May and approved in July, but I personally didn’t have to do anything after meeting with the guy in the office in May.
I guess Since you started on the web, you might try calling or emailing SS to ask just what they mean exactly by medical records….just what specifically they want. I am pretty sure they’d want anything having to do with The CC…..when symptoms showed up…..because they do use that as part of the waiting time before getting payments started. The guy I spoke to wanted to know ANYthing that looked like it might be symptoms….but as you know, there aren’t usually any untill things get really serious and you get diagnosed, so in our cancer/disease, that isn’t super helpful, but in my case, I didn’t apply for disability until 3 months after surgery (and thus 4 months after the tumor was found .
Julie
Julie
Dear Nate,
I can’t add much to what the others have said thus far. What I can say, is right now, try to focus on your wedding…..treasuring each moment. And….a beautiful moment the wedding will be. . Life…whether measured in days, weeks, months or years…..is to be lived for each moment. Love, when you find the “right” one to spend your days with, makes life worth living. There may be some moments that cause you both to tear up, but just know, that is an expression of just how deeply you care and love each other. May your wedding bring many happy moments that overshadow anything that has recently happened or worries about what is to come. My husband and I have been married 41 years and through this cancer, he has been my rock, but I worry about him also. Caring more about the person than yourself……That, dear Nick, is LOVE!!!! My wedding wish for you, is to both feel this depth of caring and find joy in one another and that it will define your lives together, not the cancer. Happy Wedding…Happy Marriage.
Sharon, I’m so sorry to hear that your husband, Phil, has passed from CC. It is a very hard thing for all of us to hear, because we want so desperately to hear news of success. But, your dear SIL’s idea of a memorial run in Phil’s name ensures that his death wasn’t in vain. Some good and maybe, hopefully, a cure will come from the memorial run donations. I hope that you can find some strength and peace in that. Meanwhile, know that our hearts are with you.
Love, Julie T.
