So I have been waiting for 16 months and I finally saw a pulmonologist today and what a shock. All this time I have been told I have emphysema and I had a chest X-ray before I went in today and he said my lungs look good. He thinks I have a neurological disorder causing my breathing problems. I am trying to put this all together in my head with all the portals and information from doctors. Like all the doctors they don’t seem to understand, I can’t walk from one end of my house to the other without being out of breath so I can’t exercise. I am in a1000 calorie a day diet. Have been since February and I eat between 500 and 750 calories a day and I don’t lose an ounce. They act like losing weight is no big issue. It is for me and if they have some miracle in their pocket, I would like to know what it is. But right now I am trying to absorb neurological damage to my lungs.
Ms. Mary,
I’m sorry your are having to deal with all of this. I know about weight gain and not being able to control it. When I ruptured, I was in ICU for 26 days I wasn’t eating and they threatened a feeding tube. I lost absolutely no weight. Dr. Stacey Quintero-Wolfe at WFBH ordered a special MRA. Low and behold I have a pituitary adenoma, cyst, tumor. She’s going to check it in a week or so. Dr. Wolfe checks it every five years I think. That may be something your doctor needs to order. I know my cousin who is a Registered Dietician/Nutrionist said that to lose weight one needs protein and a balanced diet. You may also want to check with a dietician. Apparently, if I remember correctly, when we don’t get enough protein and calories, our body goes into saving mode and will do the opposite of what we want. So instead of losing weight, your body may be trying to store what little it is getting. About 40 years ago the USN put me on a diet to gain weight. I only had to gain somewhere around 5-10 pounds and never did, despite several months of eating with the company of the Master Chief and being taken off all Physical Training. It took about 15 years for me to put on those pounds and then I didn’t stop. It is frustrating!
For breathing, I don’t know how to approach it. It amazes me that a doctor would give a diagnosis without doing the tests it requires.
I had some issue several years ago and quit wearing a bra. It felt like the vertebrae across the bra line was hit with a baseball bat and it would be extremely hard to breathe. The PCP couldn’t figure it out. The allergist said use your inhaler. My new Neurologist did a thoracic MRI and according to the reading there’s just arthritis in that area and some cysts on the nerve root endings. He did tell me to follow up with my Neurosurgeon because of my cervical vertebrae.
I go for a shot this Friday for a shot in my thoracic area. I hate shots. The one and only time I’ve had a shot in my spine was 2012. I cried, I may have broken the RN’s hand as she was crying but she insisted I squeeze her hand, even the Anesthesiologist cried. I begged him to take it out and he said he had to finish. He also kept repeating there was no room for the needle. They had to help me to the car, I couldn’t walk. Two weeks later I was in surgery for my lumbar fusion. Perhaps a Neurosurgeon could figure it out. What did the Pulmonologist say to do?
It’s not making any sense to me but it seems at this point the new guy in town wants to begin all over again. He wants me to have a CBC, an echocardiogram and a pulmonary function test. I had 2 pulmonary function tests, heaven knows how many echos and I want to have a port put in for drawing blood. I’m sure my PCP will want another one next month, unless I can make him forget about it. I have almost no veins left. They call me a hard stick and I call me an impossible stick. They pick and probe all over and it takes at least a half an hour to find a vein. All the time telling me to just relax.
I have patient portals everywhere but none talk to the others. My neurologist and neurosurgeon are literally in the office across the hall from the pulmonologist. I am thinking since they think this could be neurological, maybe they should talk to my neurologist and/or neurosurgeon.
Now, I am in a better mood. Not really but I will try. I was thinking about this Dr. I have been waiting for an appointment with for 16 months and it dawned on me, I was the only one in his office… when I went in and when I went out. There’s 16+ doctors in that office. I was supposed to have a F/U in 6 weeks but that’s the 21st of December. They called and the office closes for the holidays so I won’t get to see him again until January 7th.
I am looking for a dietician but I live in Rural, Rural County, KY so the odds aren’t good. I use eggs for my protein source but an egg a day isn’t nearly as good as an apple (pie with ice cream) a day but we try not to think like that.
I have just lost all my faith in doctors. This sharing records and portals was supposed to be to prevent repeating tests and I have 3 portals. One for my neurologist, one for the hospital where I get most of my tests done and one for my PCP. And none of them are connected to or can access the other’s information. We don’t have Uber and I don’t drive because of my balance issue and seizures. I can talk about 2 sentences before I am out of breath and sound like a dirty old man on the other end of the phone. It’s a daily challenge.
It is definitely a hassle when we live in rural areas! And you’re correct that portals aren’t shared. My portal with my Neurosurgeon allows me to share one time with a health professional. I haven’t done that as yet as no one seems all that interested. I do wish I could print from any of my portals, but none allow that which isn’t bright.
I know how aggravating and painful a hard stick can be. I’ve still got scar tissue from being in Neuro ICU so long. What I learned to do is get completely hydrated the day before and of the blood tests. I breathe out when they stick the needle in so my muscles are relaxed. I do a lot of relaxation breathing. I taught it to my Dad, some nitwit PA diagnosed him with COPD, a few years later, his new Internist finally did a lung X-ray. He had developed lung cancer. The oncologist PA said the PA that gave the COPD diagnosis should have done the X-ray. His oncologist said Dad got it from smoking for decades. I asked him if the AHA and ALA were incorrect that if you stopped smoking, your lungs would clear up in seven years. Dad hadn’t smoked for over 20 I guess it was. The Oncologist had nothing to say. ROFLOL
We have to be our own advocates. We have to carry a lot of information so we can pass it on to the doctors. We absolutely have to check our medical records and if something is incorrect, it is up to us to figure out a way to get someone to correct it other than in a doctor’s notes. I haven’t figured out how to do that as yet and I blame it on the medical field assuming rather than knowing. If anyone knows, please share! What I do is every time I meet with a specialist, I request the information be sent to my PCP. Every time I get an image, I request the images and findings are sent to the Neurologist and the findings are sent to my PCP. My PCP knows I think of her as my gatekeeper, so it works out well,
For a dietician, call your health insurance and ask them for a recommendation in your area. Tell them you need to be able to do a Zoom meeting or something similar. My cousin that’s a registered dietician/nutritionist resides up near Ft. Thomas. She used to work at a big hospital, but they downsized and let the experienced ones go, she was a year shy of retiring back then, There are Dietician’s that are available on the Internet, you just have to see if your insurance will cover their cost.
LabCorp sent me a home blood test that I had no idea they why they sent it to me, I called all my doctors and none had requested it. When my Rheumatologist has blood drawn, it’s a heck of a lot of vials. I think it might be from something the insurance company has concocted. I’m waiting for LabCorp to reply but not holding my breath.
Stay positive, try to stay hydrated and eat better. I’m concerned your not getting enough food. Try those Oikos Greek yogurt cups, I like them.
After 6 weeks of unanswered phone calls and portal messages, I called my hospital to contact the Pulmonologist to see if he still needed the tests. Apparently he did because he sent the order to them for the echocardiogram and PFT. My hospital blood lab will not call him, he needs to call them. So I have 2 of 3. If he wants another CBC I can go next door but there isn’t anything he can get from my blood that my PCP dies;!'t already have. I went to the PCP in December. He wants to see me again in January. He tried putting me on an anti-depressant. After the 2nd day I was experiencing that “out of body” feeling. I gave it a week and stopped taking them. He ordered another blood test. I got the results from it. I have been anemic all my life. Sometimes it is worse than others. My body doesn’t absorb Vitamin B or folic acid. This time the anemia is front and center for iron deficiency. Give me a rare (red, raw) steak and I can fix that real fast but instead I have to chew on a lettuce leaf.
I also got the results from my echo and I am forecasting a cardiologist in my future. I have flow reversal, leaky valves and it’s pretty much a mess.
It’s strange because before my brain blew up I could breath, walk, talk, sleep, lay down and breath at the same time. Now any organ of my body that causes fatigue, weakness and shortness of breath is popping up as damaged. So it seems like it blew up my brain and all the other parts of my body that makes me just bone tired. So far the only thing a doctor has done as far as treatment is concerned is give me an anti depressant that’s primary side effect is weight gain. I’m hanging in there but my fingers are about to lose their grip. I got hit by a personal matter that literally knocked me off my feet and set me back 50 years.
Wow Mary, your strength in fighting is amazing! It’s odd that a medical facility won’t just fax over the results to the specialist who ordered them, especially here in the USA, it baffles me. Since our brain controls all our organ functions that doesn’t baffle me at all. Given our age group, finding things not working as they did seems to be part of the aging process.
With some anti-depressants, they can take a month or longer to get stabilized. Decades ago my then PCP assumed I was depressed and I struggled for the six weeks only to get depressed. Luckily, she always followed me weekly to see how I was getting on with any new medication from any doctor and said to me on the anti-depressant that she was incorrect and I was correct. She also advised me not to take another! Perhaps your PCP can prescribe a milder anti-depressant. If you focus on a minor side effect like weight gain, talk to your PCP! He or she may be able to help with that.
Not everything can be blamed on our brains. Not eating correctly can cause a lot of issues with all of our organs, I would suggest a Registered Dietician or Nutritionist to help with that. As for heart problems, I apparently inherited mine from my Mom and it’s just being watched. If they want to do surgery when I am in my 80’s like she was, I may just pass. At 60, where I’m at now, I would weigh it against the spinal surgery I need. I’m all about quality of life and not quantity, but that’s me.
My Mom was also low in iron. We had to eat liver and onions every Wednesday growing up. And a lot of spinach! Luckily I like both. She also used to take something called FemIron I believe the name was, but she was followed by our family doctor.
Blood tests as you know can change often. Your Pulmonologist may want to look at something different than your PCP. It’s not a big deal to get stuck for a blood draw. My Rheumatologist takes a heck of a lot more blood than my PCP does that’s for sure.
Wishing you the best,
Moltroub
Can you believe it. I had to cancel my appointment with my pulmonologist because the hospital didn’t have my PFT read. They just recorded it on my portal today but haven’t sent it to my pulmonologist yet. I swear I feel like I am fighting with the world. I have been fighting with everybody about everything. Now I will definitely need to do another CBC. By the time I get another appointment with the pulmonologist, my primary care physician will want my labs. But the good news?? My PFT hasn’t changed one bit from last year. So it looks like it is a neurological problem with my breathing. My PCP told me there’s nothing they can do if it’s neurological but there’s nothing they can do if it’s COPD so that’s tat for tat. I wonder can my lack of ability to lose weight neurological? Hmmmm…
I know about the liver and onions. My mother made it once a week, too. We did mixed greens because my Dad didn’t like spinach. I am like you, I like liver and onions and I like spinach and greens, just not a big fan of mustard greens. They’re too tangy but okay when they are mixed with turnip greens. I top them with vinegar anyway so I don’t know why tangy would bother me. My OH, I’m the best half, would bury liver and onions and spinach in the back yard. He hates both of them. I have to admit I hate cooking liver. I can’t eat chicken livers, the dog takes them away from me. Not good for the waistline either.
I am off for my next big adventure. Today was grocery day and I am going to try to figure out what I want to fix. I had ordered some eggs the other day and they were out and substituted Eggland’s Best. I scrambled 2 last night for dinner and they upset my stomach. I was up all night, got up at 4 this morning with heartburn and I sat up until 8. I went back to bed and slept for 2 more hours but my stomach has been upset all day so nothing sounds good for supper.
Take care and be safe.
@Mary I’m laughing because we must be in the same age group growing up with liver and onions! The first time I ate greens I despised them. The neighbor had cooked and served them. Mom knew right away what the neighbor had done, didn’t wait for the first frost to take the bitterness down. The neighbor gave us a couple big paper grocery Mom put vinegar on them which was much better. I think she also stuck them in the freezer before cooking. But she said no thanks to the next offering of greens. LOL
I went shopping before I was put down to 2# weight limit last week and I thought it was Christmas! Went for some flour sack cloths so we could bake bread this weekend and low and behold, there was TP, paper towels and disinfectant wipes! And yesterday after a visit to a general surgeon, I was asked to pick up a few things at the grocery store. They had everything we were needing/wanting including eggs and the type of milk we like! My friends thing I should buy a lottery ticket!
I don’t know if I told you or not, but for the 26 days I was in ICU, I lost absolutely no weight. I wasn’t eating and they had threatened to put me on a feeding tube. I know if you don’t eat, you cannot lose weight, but being in ICU things are different. Dr. Wolfe ordered a special type of scan to look at my pituitary gland and I do have a pituitary adenoma. She shared they are usually found at autopsy or incidentally if the scan ordered can catch it. She is keeping an eye on it every five years or so. I couldn’t gain weight in the Navy despite their efforts and my anguish. It took me over ten years to put the two pounds on they wanted but my Navy days were long gone by then. The weight gain didn’t stop and the agency I was working for started charging extra on our insurance for folks overweight. So extra I paid. Worked with a dietician and at a gym, still no weight loss. But the rupture provided the why’s of it all. Doctors still put down obesity but they don’t get on me to try to lose weight. The third time I was coiled, a doctor came by and asked if I was willing to be part of their research. I’m all for research! The hypothesis was that obesity and aneurysms are linked. She brought out the Ultrasound machine, asked which had I used to write and commenced with my left leg, no fat. I had almost severed a nerve to my right arm as a teenager and did a lot of things with my left. So she went to the right leg, no fat. So see ask the next time you get an MRI if they will look at your pituitary gland. That way you will at least know.
All the best!
Moltroub