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Side comment: It was 6 years ago today that I confronted my WH with my suspicions and he got mad and walked out the door, hasn't spoken to me since and still pretends I don't exist. On that day, we'd been married 44 years, 11 months and 8 days. It's been a long hard slog ever since.

OK, now to my question/confusion. It's such a long story but I haven't felt good for quite a few years and I've been especially not right since last Fall. Dizziness after bending over long enough to scoop the litter box or tie my shoes, etc. My weight has continued to creep up, I always feel bloated, I never have energy. I get short of breath really easy. For the last year or two, my oxygen is never higher than 91 or 92. Everyone just sort of blinks and says that's not bad. But to me it was because it was new. I also occasionally get really swollen ankles. I break into sweats over every little thing. No doctor listens to me and after awhile, I just sank into the belief that I'm lazy and hopeless.

Since November, I've gone to a cardiologist, worn the 30 day monitor thing, had echocardiogram and stress test. He discovered nothing of note although a few litttle things. I told him the fronts of my legs right above my feet hurt like crazy when anyone presses on them and he was pretty nonchalant about it, saying maybe I should have PCP refer me to vascular doc to look at venous insufficiency. Went to a pulmonologist and had a low-dose lung CT scan (I do every year due to former smoking habit - this was year number 15 since quitting). I had another sleep test.

4 weeks ago, I was at the pulmonologist and my feet looked like bratwursts, they were really swollen. Doc says, oh, you should ask your Primary Care for water pills. He ordered a new CPAP machine, a pulmonary function test and said he'd see me in 4 months. Well, I guess I didn't like that answer cuz a week later, I went to the ER for the first time in my life because my Oxygen was at 84. I was hospitalized for 4 days with double pneumonia, viral type. Further testing showed my potassium was also very low. While in the hospital, my oxygen rose and now stays at 95 or better. I'm on Lasix and Potassium plus an inhaler.

Prior to going in the hospital, my upper arms hurt. They hurt a lot and every time I pick something up, they scream at me. The fronts of the arms, like where you'd flex to show your muscles.

While I was in the hospital, I was on 3 different antibiotics (until they determined my pneumonia was viral) and the pain in my arms went away. Probably no correlation but I don't know.

Anyway, does anyone know of any condition or disease that this might be pointing to? There's no reason for my arms to hurt like this and the next person who tells me I do too much is going to get it big time!

Also, any advice on the tenderness on fronts of legs above foot?

My new CPAP came and I'm sleeping 6-7 hours a night which is a miracle for me. I lost 12 lbs. in the hospital but have been slowly gaining it all back so I'm concerned about fluid buildup again. I was diagnosed with diastolic ventricular something or other - a stiffness in the wall of my ventricle keeping my blood from flowing out like it should.

Pulmonary function test showed moderate full exhale and after a nebulizer treatment, it improved drastically. I don't have the real results from that yet.

Thanks for any advice!

So it sounds like you may have what is called pulmonary hypertension, that impedes the function of your heart and causes heart failure symptoms.
You say your weight is going up are you continuing to take the diuretic? Are you gaining actual weight or retaining fluid, that is a very important distinction. If its fluid retention then you need to call whoever is managing your diuretic and let them know.
Also have you ever been bitten by a tick and tested for lyme disease? Are you sure you were not getting steroids while inpt and that is why the pain got better? If no steroids, and antibiotics helped the pain then I would ask for a lyme disease test. Often joint pain improves w/ certain antibiotics if it is lyme. If you were on steroids as well that would be why the pain improved. You could have and most likely did get them IV when you first were diagnosed w/ pneumonia. It would also decrease any inflammation in your lungs and account for why your saturations were better.

Also thinking on this have you had antibody studies, and tested for autoimmune disease?
This sounds very inflammatory in nature, and would wonder if they have done any testing for interstitial lung disease. meaning autoimmune lung inflammation.

Thanks, tushnurse! The world of medicine is so different now and I'm having trouble coping with it. So I appreciate you giving this your time and consideration because it's really hard to get any of my doctors to add up all the pieces and try to figure out if there's a correlation somewhere that points to a DX. They each have their own little niche and that's as far as they look. I had been frustrated before I was sick but it seemed better while I was in the hospital (LOVED the hospitalist doctor) but now I seem to be back to square one - take Claritin and see me in 4 months. I'm just not feeling right and 4 months is a long time to wait to see if Claritin helps my arm pain (total sarcasm).

However, you put 2 words out there that I did not want to see. Pulmonary and Hypertension. Both of my in-laws died from it and I do not want to have that! Nor do I want the interstitial lung disease. But if I have one of these conditions, I want to know it and I want to get my affairs in order. Not that I shouldn't do that at my age anyway but it adds a certain urgency to it all. Plus, if I have one of those, I'll quit looking at cruise and other travel websites and concentrate on closer to home. And if it's my time, it my time. But if it's not my time, daggummit, I want to quit wasting time feeling poorly and get on with living again.

I don't recall getting steroids but my DD mentioned them and I think some of my breathing treatments might have had steroids in them? So that probably explains the arm pain 100% and I thank you for making sense of it. It's not in my joints, though, it's definitely in the muscle (or tendon or ligament). However, I think you nailed it and there's something inflammatory going on because I noticed this morning that my arm pain seems to be related to holding my iPad when I'm lying in bed or sitting in my chair. So I will pursue that angle.

I can't tell about the weight gain, whether it's fluid or what but I've been monitoring my salt intake and never go above 1500 of my 2000 limit. They kept lecturing me about salt but I don't' use salt, I rarely eat out and I don't use a lot of prepared or frozen foods so going low salt has required absolutely no effort on my part. I left the hospital on Apr 20 with a script for 30 days of lasix and potassium but my PCP doesn't want to see me until June 8. I had a followup blood test Apr 27 and my potassium was high (slight) and my BUN and Creatinine were off. Doc said I was dehydrated, to halve the potassium for next 2 days and they'd see me in June.

And this is the new age of medicine. Big corporations running the show and all their minions follow certain protocols and forumlae and put on their blinders, don't complicate the issues by thinking and see 32 patients in 8 hours and so on. Gone are the days of getting to sit down and talk to your doctor or ask questions. I'm stymied here and while my pneumonia seems to be cured, there's still something wrong with me. Either it's gonna kill me soon so they're just avoiding that conversation or I'm just gonna slog on for the next 10 years, half alive - the anxiety from that is gonna do me in cuz I spent the last 10 years not caring if I lived or died and I worked so hard to want to be part of Life again and now this?

And the worst part of it? The very, very, very worst? I get lifetime spousal support and I am horrified to think that he'll start having extra money to live the high life with the Bimbo. I'm mostly indifferent to the XWH and his whatever but the money part still stings big time.

More meandering thoughts (more like ranting):

Humana keeps calling me to schedule an in-home visit by a nurse. I've done it the past 3 years and it's such a waste of time in my case because I get all the recommended tests, exams and immunizations, etc. Every year they hard sell me on it by saying the nurse will sit down and discuss all my concerns and collect all my information about my tests and immunizations, etc. They already have all that and if they don't, I can print off a copy of MYChart for them. (Which is full of erroneous information that a clerk in a doctor's office put in and I can't seem to get resolved but hey, once it's in your chart, it's gospel. When I had my stress test, the doctor ordered the chemical one because of my "scoliosis." News to me but hey, it's in my chart so it must be true.) Humana routinely turns down my medications and suggests substitutions that are so far off the mark that it should be criminal on their part to make these suggestions without knowing the medical reason a person is taking the medication. If I thought for one minute the nurse would sit down and talk to me about all the things that are bothering me and look at my blood tests and all the other tests I've undergone and try to put the pieces of the puzzle together, I'd do it in a heartbeat. But I've already done it so many times and ended so frustrated in the end that I'm refusing to do it again.

The medication part of my hospital stay was very frustrating but I won't get into that other than to say, again, NO ONE LISTENS! But they cured my pneumonia so I'm not going to focus on their inability to understand I don't need my Vyvanse while I'm lying in a hospital bed and no, I'm not going to take Melatonin, I have sleep apnea and melatonin is a no-no for me as well as the fact that it's an unregulated supplement and they can hand me a capsule and tell me it's Xmg of melatonin but the truth is, none of us knows what's really in that capsule. We danced that dance every night which was comical because they came in my room at least once an hour to do something, a breathing treatment, take blood, check vitals, etc. Don't get me wrong, I was glad for the company cuz I was pretty sick and couldn't sleep anyway and everyone was very kind and very nice. The funnest part was getting a new IV put in; went through that 5 times and they finally had a specialist come in from Orlando to insert a midline. That also failed but by then, I was ready to go home so they just quit poking me anymore. However, what none of them ever did, in spite of my requests, was to get me set up with a CPAP. The other thing no one did, in spite of my frequent requests, was to notify my pulmonologist I was there and wanted to see him (he was on duty as the ICU doctor in the hospital that week). My cardiologist was the one who finally told him I was there and wanted to see him.

I will say I can definitely tell the difference now that my oxygen is staying at 95/96 compared to the 91/92 readings I'd been having for the last few years. One of my biggest complaints of the past several years has been hypersomnia and even Provigil, Nuvigil, Dextra-amphetamine, Vyvanse and <expensive one I can't remember name of> didn't help me. I had televisit with my psychiatrist (I live in FL and have to use a psychiatrist for any control substance drugs and I've tried a variety of anti-depressants, stimulants and sleeping pills during the last 6 years, none of which seemed to help me much) the other day and she said at least it makes more sense now why nothing was helping me - none of those medications can oxygenate my brain. Problem now is, my brain is working and has lots of ideas and plans but the body isn't cooperating.

Sorry, this turned into more of a journal!

PCP doesn't want to see me until June 8.

This is not the expected quality of care you should be getting anyone that is inpt for a pneumonia should be seen by PCP w/in 7-14 days of Discharge. This is a scientifically proven quality metric. PERIOD.
It does sound like you have something going on that is being missed by your providers. Is there a university, med school system in your area that you can go to?
I would also say the Humana thing is pretty standard, however it sounds like you need more of a RN Case Manager to help pull the pieces together and get your providers to work together, you don't need the NP coming to the house to make sure you are doing all your health maintenance stuff up to date, that's not beneficial.
If your PCP is not part of an ACO you may also want to call humana and ask for a new PCP that is part of a "Next Gen ACO" They will pair you with a Case Manager that will work you and help you get a better control of your care.

I would also encourage you to ask your PCP to order inflammatory marker labs, to rule out any autoimmune issues, so those would include a CRP, Sed Rate, ANA, RA factor, and antibody studies. And please don't freak out about ILD, or Pulm HTN, both are much more manageable these days than they ever have been.

I thank you again and I will call the PCP office today. I actually only met her twice - my first "getting to know you appt." last November when I told her about the dizziness and shortness of breath. She referred me to the cardiolotist and the pulmonologist. Both in the same large Medical corporation, of course. And then for my next appt., she turned it into an annual wellness visit which I told her upfront I'd already had that year and, of course, they didn't listen and they didn't get paid by Humana. But it was also a waste of time because it was pretty much a repeat of everything we'd covered in my first appt. So I haven't ever really gotten to talk to her as such.

When I got out of the hospital, they didn't call me for 4 days so I called them and they were quite short with me. I said I need to get this blood test done and I might as well have been whistling in the wind. Finally the gal said she'd see if the NP could see me since the doctor was booked so far out. So I did get in to see the NP and she ordered the potassium level check and did call me to skip the potassium for 2 nights. But there's no new blood test scheduled and as I mentioned, my RX for Lasix and potassium will both run out 3 weeks before my June 8 appt. So no, I don't have much faith in the PCP; not to mention, she added the chlorithalidone to my RX regimen last November because my BP was creeping up and then never did any subsequent testing. In my mind, that could have been a contributing factor to the drastically low potassium level I was at when I went in the hospital. The NP was nice enough but I think she's new and there's a language barrier so I'm not sure I have a lot of faith that we could have an good in depth discussion about all this. The cardiologist is halfway back out the door before he's finished saying Hello and the Pulmonologist is so pleasant and kind and cute and lots of reassuring when we're in person but it's all just for show. So yes, I'm very frustrated and I feel bad for them but hey, this is my life here and I want to do some things and go some places and see some people, not just sit around waiting for calls that never come.

Anyway, 2 of my DD's college friends are in town and one of them is a manager of something for surgeons and is married to an NP and she said I need a nurse to put all these pieces together for me cuz the doctors these days don't do that type of thing much. So I appreciate your advice and will be calling Humana today to see if I can get something worked out.

She said the same as you - check for autoimmune things and Lyme disease (she had it). So I thank you again because I never would have thought of those things and I think you're on to something.

And I know I'm impatient and I expect a lot and part of my issue is my New Jersey personality in this Florida setting. I'm about ready to go back North for awhile, where I can be among my own kind. :)

Today is the 6th Anniversary of me joining S.I. Hard to believe!

[This message edited by josiep at 1:46 PM, Friday, May 5th]

Josiep, I definitely relate to your frustration. And I'd definitely nominate Tushnurse to RUN the health care system in our country.

I have made the decision to just live my life the best I can - walking around with an aorta aneursythm and feeling like I have a time bomb. My cardio doctor said it's 'nothing to worry about unless it gets larger." So I'm taking him at his word. About your oxygen levels - that is an improvement. My lung doctor - at MY request after I researched - prescribed Trelegy for me and I cannot sing the praises of this drug enough! No more coughing, no more shortness of breath and my oxygen levels stay close to 99 percent all the time! Trelegy is a largeer inhaler and it powder coats your lungs. I hope there isn't any long-term problems with using it because it is helpeing me tremendously.

In this day and time when big insurance companies are 'in charge' of our healthcare, we all have to use a lot of common sense to heal and take care of ourselves. I hope your pain lessens and you feel better.

Let me guess. HCA? if that's the system you are im find a new one. Even if it means you need to drive to one of the coastal towns.
Yes most NPs will put the whole thing together. Pbysocians are trained to treat conditions and provide meds. NPs and Nurses in general are taught to look at the person as a whole and incorporate many things along with meds to treat conditions.
Have you had a TEE? PFT? You need to call the current dr and ask of they want you to continue the new meds post DC and ask them to send rxs in if so. This is one of the reasons that post discharge visit is so damned important.
I would also ask if you need repeat labs since you have been on the diuretic for a while it can impact kidney function esp if you aren't drinking enough water.
Are you getting enough protein? 80 grams daily minimum? Since it appears there is an inflammatory process going on I'd also encourage you to eliminate gluten and sugar from your diet. Yes it is hard initially but if it starts helping you feel better you will be glad you did it. If it doesn't change anything when you finally see the right specialist you will be able to say you have already tried these things.