I am thankful I survived my ruptured aneuysm and my SAH. I know how lucky I am. While in the hospital they stuck me on a BiPap machine, oxygen and diagnosed me with emphysema. I know…I smoked and I knew the dangers so suck it up. Now they want to take the oxygen away as it seems Medicare is pretty strict about being on a Pap machine and having oxygen. If it works I am fine with it, one less bill to pay but my PCP is running around like his hair is on fire. To him emphysema is COPD and a lot of doctors agree with that. He believes I need oxygen with the BiPap and my sleep doctor is a…well, we won’t say what he thinks he is. I have an appointment with a new sleep doctor and pulmonologist but his first opening was the first of May. My oxygen recertification is due March 7th. So we shall see. I also have pulmonary artery disease so I’m not going to be running any marathons any time soon. I have a hard time getting around my house now and the stroke effects seem to be getting worse each day. And if I gain any more weight, I am going to go lay down in the road and wait for a car to come by. I had a hysterectomy when I was 19 and was forced into premature menopause so that’s not it. I have never had a weight problem,in fact I have had problems with being underweight. Once I got the PAD diagnosis walking was out of the question and it was my main exercise. Since the stroke I move slower and less steady each day. I wonder if part of it is my weight. My PCP got on me about it and I told him I don’t know why I’m gaining and he says increase in calories and it isn’t. I decided to give it a test and for 2 weeks I ate a small bowl of cottage cheese with fresh fruit … blueberries and strawberries and I only drank water and my one cup of coffee with Splenda in the morning.i gained 3.2 pounds … gained. No snacks and no cheating. I have never been much of a sweet eater, salty snacks are my weakness and there are none in the house. Even if they were in the house I wouldn’t have a chance to eat them I am always in the bathroom getting rid of water.
Anybody have any experience with this or any suggestions?
Hey Mary,
Since my last neurosurgery my metabolism has done a triple somersault with a twist and one 1/2 turn. All of my former ‘normals’ don’t seem normal anymore but mine’s going the other way, I’m losing weight and I didn’t have much to lose in the first place. I’ve had to adjust everything from medications to diet to exercise etc.
There are some test that were done by an endocrinologist to test hormone levels and medication was recommended for that. Your experience of having conflicting opinions is not unusual when we see differing fields of medicine and this can be a real battle of ‘Whose right’ and finding someone you trust to assist can be a benefit, someone like a medical advocate maybe.
Hi Merl,
I think you are right but I have to trust Medicare and my prescription insurance company, too. That’s scary. I worked in insurance for over 25 years. When they started telling doctors what they could and couldn’t do and how long a patient can stay in the hospital I was just waiting for that first wrongful death suit to hit. Now they have started telling them not only what prescriptions they can have but how many. To give you a real life example of the cost efficiency of this. I was using Symbicort for my inhaler. That’s about $984 for 3 months for my insurance company. They decided they don’t want to cover Symbicort and I need to take Dulera instead…the insurance company, not my doctor. When they sent it in, they also sent in an order for 3 months of Dulera $1,044. So I have 2 unused Symbicort inhalers plus one that is still over half full. Doc says he wants me to take Spiriva Respimat inhaler for COPD with the Dulera. My insurance company doesn’t cover Spiriva and wants me to take Anoro. I have no clue what that is costing, I was beyond caring anymore when I asked my Doc if it is ok to take Dulera with Spiriva. Of course not, so he ordered Fenvent at $1,050 for that one. I now have about $4,000 worth of inhalers. I am going to have to throw away about $2,000 worth of them because I can’t use them with my Anora. Well, the company has a limit on Anora and I can only get it a month at a time. The other inhalers I can get a 3 month supply. My Anora came up along with a prescription I didn’t recognize when they sent me notice that it was ready. I went in, got my Anora and they had a refill for my Symbicort that started this whole mess. I told them to put it back on the shelf and now I am waiting for my Dulera. If they would just mess up and give me my Spiriva I could have a full collection and become the town’s inhaler drug lord. But the oxygen is just over the edge. I swear between the increased stress of dealing with doctors, pharmacies, insurance and weight, I am more likely to burst than another aneurysm. And my sleep doctor (who by day is a pediatrician) thinks he might need to put me on a stimulant because I am so tired during the day and sleeping too much. I’m on so many medications to control my blood pressure and anxiety and he wants to throw a stimulant in to the mix. I have to admit after I looked at him like a deer caught in headlights and was giving some serious thought to making a run for it, but I wouldn’t have made it to the door before I needed oxygen, he said he really doesn’t want to. Hey Doc, remember the part about the other doctors not giving me anything for my migraine headaches? Please 'member something. But then I’m thinking a stimulant might help me with weight loss. Hmmn, the only negative could be it might kill me. Dang, the downside always outweighs the good side. Let’s all ponder for a second…why do we think the cost of prescriptions and medical care are so high???
Good Morning Mary! I used to have a problem with being underweight, the USN put me on a diet to gain weight and I never gained an ounce. Ten or so years later, I agreed to be a welder for a friend whilst I was looking for employment in my field, I gained the weight the USN wanted and then some. When I ruptured, the radiologist and neurosurgeon found something on or near my pituitary gland. It’s actually bigger than my aneurysm was. It’s a lesion/tumor/pituitary adenoma depending on who’s talking and writing it up. Doctors don’t tell me to lose weight anymore. I used to apologize to my neurosurgeon when she went through my groin for my legs being fat, she said nope it’s all muscle. On the last coiling, a doctor came by with an ultrasound, asked to have permission to put me in her study. Theory was that obesity led to aneurysms. She found no fat in my thighs. So I’d ask for the special MRA that looks at the pituitary gland. All I have to do is eat sensibly like you I can gain several pounds in one day. I’m more a savory than a sweets eater as well
When my folks moved here to NC, the PA at their internist said my Dad had COPD from his years of smoking, the PA and the Internist said he didn’t have SLE and stopped all his medicine for that despite having been diagnosed multiple times in CA. He developed lung cancer and had to go to oncologist who said it was from his years of smoking. I said so the Am Lung Assoc, is wrong since he hadn’t smoked for over twenty years… I asked how a doctor knew if someone had COPD which is used interchangeably with emphysema and they said the only way to tell was X-ray, so I hope that’s how the hospital diagnosed you. The theory with my Dad is that he moved here with early stage of lung cancer that may have been treatable if the ones who think they are better than others would have followed the protocol.
For me, I developed something in my lower lobes from the anesthesia, every time I go under, it gets a little worse. Sorry I forget what it’s called, but none of the doctors are concerned about it and it only slows me down when my allergies are really bad
Hang in there and make sure they’re doing the proper testing for the diagnosis.