How can you mend a broken heart?

[havanaholly]

Nah, Mary; ol Willie had it right. Whodja think advises all those insurance execs?

[woodland_miniatures]

Yup, you're right!

[Wolfie]

Deb you are a very strong woman, and you will overcome this hurtle, like you have overcome all of the others! Hang in there!

[miniwendy]

Sending thoughts and prayers for healing

[Corwin]

I am soo glad to hear you are gona get fixed now please get better!

Corwin

[Selkie]

Just checking in on you. Wondering if you are doing any better and if your tests got completed. Also wondering if you got the insurance company to cooperate yet?

Aren't they just the most frustrating things in the entire universe? We have an ongoing issue with ours for one of the little people I'm raising and it's just not right that they have so much power over our health.

Hoping that things are settling down and working out bit by bit.

[Deb]

I'm sorry that I haven't been around much lately. I think I've had six dr appointments in two weeks and it's taken the last bit of energy out of me. So to update:

The insurance company never did approve the ct scan but we did get the echo done. That said that I have pulmonary hypertension (narrowing and constricting of the blood vessels connected to the lungs). They also found pulmonic and tricuspid regurgitation (a "backwash" of blood into chambers of the heart where it should be pumping it out, not letting it back in). That may explain some of the symptoms of a hole in the heart which they didn't see on the echo. The pulmonologist didn't seem satisfied with that and suggested that I see a cardiologist "just to make sure we didn't miss anything". His lack of confidence wasn't very reassuring so I called Bruce's cardiologist and was VERY lucky that they had a cancellation and I got an appointment with him within two weeks. I'll see him tomorrow and we'll find out what he has to say. This is the doctor who saved Bruce's life so I have a lot of faith in his ability.

The arterial blood gas report confirmed a build up of carbon dioxide in my system, something the pulmo had suspected as diminished lung capacity. Previously he had attributed that to muscle weakness caused by a lifetime of thyroid problems as well as the current myofascia issues. He seemed to have forgotten that since he's trying to blame it on my weight now, completely disregarding the fact that this all started before I gained weight. I'm not going to let him get away with that because attributing the cause to a symptom instead of looking for the actual issue could be the death of me. I'm glad to be taking this to the cardiologist who has known me for four years and will remember that I wasn't overweight when he met me.

I finally gave in and had a sleep study done since it seems to be something that every doctor wants. IMO it was the biggest waste of time and money ever. I have insomnia because I have fibroymalgia, carpel tunnel and excruciating back pain---all three of which will really mess up your sleep. I stopped snoring after the thyroid surgery and I've never stopped breathing during the night. I really feel like this insistence that I have sleep apnea is yet another way of avoiding having to work to find the real issue. But there will be roadblocks to further care until they have their sleep study so I did it this week. It seemed like a set up to me since the paperwork they had me sign said "cpap trial", not "sleep study" and they already had the machine hooked up beside the bed. They even made me try on masks to decide which one to use *before* I went to sleep. About half way thru the study they came in to put it on me and I asked the tech if I'd been snoring or had stopped breathing. She said, "Um, well, just a tiny bit". Whatever. We quickly found out that I can't use any of the masks at all because the forced air flow is too strong for me to exhale against. (if they'd pay attention they'd remember that muscle weakness would inhibit my pushing air out of my lungs, especially against a hurricane--besides that, if my breathing is being effected by muscle weakness shouldn't they fix that instead of training my body to rely on a machine to breathe???) So I left it on as long as I could and then had a panic attack and ripped it off. But I'm willing to bet that I'll have a fight with at least two doctors telling me that I need to be on it even tho there isn't really a need for it. After I ripped it off, they left me alone and I slept just fine without it. <shaking head> I wish they would listen to me. The only time I wake up is when I move slightly and the pain wakes me, then I can't go back to sleep.

<deep breath> So that's where we are now. I'm pinning a lot of hope on my visit with the cardiologist tomorrow because I know for sure that Dr M doesn't mess around. He's a cardiac surgeon and he believes in fixing things.

On the other side of things, I saw the back doctor who asked me how things had gone after the S joint injections. I said that we'd done the S joints months ago with no change and this time had been the lumbar section and it hadn't worked at all. He looked puzzled and said his notes from the day surgery showed they did the S joints last time. Great. They did the same worthless procedure twice. The alternatives he started talking about were more than a little scary so I asked him why we weren't pursuing the bulging disc problem instead and he said he didn't remember any bulging discs. I referred him back to my MRI films and he couldn't find them. Soooooooo, in addition to doing the wrong procedure they lost my films and he was going to look into it and call me back. It's been almost two weeks with no word from him. The one thing I did finally convince him to consider is the way my right foot is turning outward and the way the most intense pain is centered in my hip. (not like I haven't pointed that out to him before) He finally decided to do a hip xray and we'll see what happens there if he ever calls me back. I know for sure that I'm not going to pay for that second procedure!

And last but not least, I saw the endo for the first follow up with her after my surgery and discovered that my TSH is out in the stratosphere at .05. I should be bouncing off the walls and losing weight like crazy but I'm not so something is wrong there. I pointed out my history of intolerance to synthroid and the cardiac side effects of it the first time I was on it, asking her to change me to Armour instead. Her reply? "Well, it's probably the red dye in the synthroid tablets we have you on. Let's change you over to the white synthroid instead". <banging head on desk> I pointed out the first synthroid that caused my thyroid storm was yellow and she had no answer for that. She's fired and I'll find a new endo. I'll find out what the cardiologist says about it because I'm pretty sure he's no stranger to the effects of synthroid on the heart.

I'm sorry that I haven't been around much lately and that I'm so far behind on answering PMs and emails. I'm not ignoring anyone, it just seems like I don't even have enough energy to talk these days. When I'm not at one appointment or another I spend my days either laying on the couch or playing solitaire and the world is drifting further away from me. I post a little on FB because that's only a few sentences and then it's back to limbo for me. I promise that I'll do better about keeping in touch soon, it's just so much time lately has been spent at the hospital and in doctor offices that it's taken every ounce of energy I have to keep up with those. As soon as this spate of doctor-go-round is over I'll have more energy to get back to a normal routine of being in the studio and here on the forum. I miss you all.

Deb

[Muriel]

We miss you too Deb, but totally understand the need to focus on appointments and health now. Thank you for the update! Keeping you in my thoughts, wishing everything goes as well as it can (and stupid doctors stop being stupid doctors!)

[otterine]

You're in my thoughts, Deb! Warm hugs!

[what2craftnow]

Sending you gentle hugs Deb You are missed around here for sure, but your health is much more important, so you lay low and do what you have to do. I truly hope this cardiologist can get to the bottom of what is going on and get you back on track. We will all be here, and are all praying you get the treatment you need to get well.

Sending you lots and lots of positive energy - you hang in there! :monkeydance:

[KathieB]

Sending vibes to the cardiologist to keep his mind clear and focused on what really counts and not the gibberish in the reports churned out by the other "specialists".

I swear, if someone could figure out how to distill common sense and inject it into the many over-educated yet ignorant and arrogant professionals of the world, it would be a greater boon to mankind than the discovery that chocolate is good to eat.

[Deb]

Just a quick update: The cardiologist is pretty sure that there's nothing seriously wrong with my heart. He said the pulmonary hypertension was mild enough not to worry about it and it appears he's going to push me back to the pulmonologist. He's doing a stress test first just to check and make sure my cardiac and pulmonary functions are working together properly but he's pretty sure that it's okay. He also changed my blood pressure meds and seemed a little shocked that I was on such a mega dose of the worst possible choice of bp meds. It was that quack internist who put me on the Toprol. Turns out that after a few months on it, it can cause horrible exhaustion and some other nasty side effects. So he's weaning me off of it and will start me on a new med in two weeks.

The back doctor finally called and sure 'nuff they goofed and did the same procedure twice. Someone sent a copy of the first order for S1 injections instead of sending the new order for lumbar facet injections. I'm a little bit miffed at having gone thru that second procedure for nothing. They're setting up the correct procedure and I'll get 60 injections at once in that one. They insert a big hollow needle type catheter in several places in my back and use them as entry points for the smaller needles to make the injections. The doc is pretty confident that it's going to help so I'll keep my fingers crossed. They still haven't found my MRI films but the hip x-ray showed bone spurs in both hip sockets. I'm willing to bet that's causing a good portion of the pain but he said that we need to do the lumbar stuff before we try anything with the hips. Apparently the insurance companies seldom pay for the hip procedure he thinks would help the most so that might not even be an option.

I swear, if someone could figure out how to distill common sense and inject it into the many over-educated yet ignorant and arrogant professionals of the world, it would be a greater boon to mankind than the discovery that chocolate is good to eat.

Amen Sister, amen!

Deb

[KathieB]

For those of you who aren't on Facebook, Deb posted this morning that she is in a lot of pain after the multiple lumbar facet injections, more pain than anticipated. Healing (virtual) hugs and positive thoughts heading her way!

[Anna]

Most definitly sending lots and lots of healing thoughts along with HUGS!!!!

Thinking of you sweetie!

HUGS

[AuntDee]

Kathie, Thanks for the update. My thoughts have been on Deb for the last day or two, wondeirng how she was doing. Lots of good thoughts and prayers for pain to subside and healing to begin going her way. Rita

[heidiiiii]

I forgot to ask about how you are doing on the new BP meds. Do you notice any difference yet?

[what2craftnow]

Hang in there Deb! Sending many, many healing thoughts and prayers your way! B)

[Deb]

Thank you guys for thinking about me. I'm not always able to reply right away but it really does help when I see and feel so much love from y'all. The lumbar facet injections were definitely a failure with a lot of additional pain that literally knocked me off my feet all week. Now that the side effects are wearing off the original pain is still there which means the shots didn't work. From here on the alternatives get pretty nasty so I'm going to put my back on hold for awhile. I can't afford to waste energy on this when there are more important things that need attention. I had to cancel the metabolic stress test because of the shots which is bad because that test is a lot more important than my back. It's rescheduled for the 22nd and hopefully it will tell both the cardiologist and the pulmonologist what they need to know since it tests both lungs and heart as well as how they function together.

Heidi, the new blood pressure med didn't work out real well. Apparently I have some allergy to it since I broke out in the strangest red rash on my hands and arms after the first dose. So they pulled me off that and I started a new one today. I don't have any purple polka dots on my face yet and I haven't sprouted feathers so hopefully this one will work.

It's been a really weird week. Next week will be better. (I know it will because for the first time in a couple of months I have a whole week with no doctor appointments!!)

Hugs to you all,

Deb

[LLyn M.]

OMG! I hadn't read this post for a while and am shocked and dismayed that these

imbociles are still trying to take care of you.!I will look you up on FB.And will continue to send positive energy and prayers to you.You so deserve to catch a break!!

[Deb]

Keep your fingers crossed for me tomorrow (Monday). I'm having the metobolic stress test and of all the tests I've had done this one is the one that makes me feel apprehensive. They'll put a clamp on my nose so I can only breathe thru my mouth and then put a mouthpiece inside my mouth with a hose in it so air intake is rather restricted. I've had this done for a lot of different pulmonary tests and it's a really claustrophobic feeling which is uncomfortable enough but this time after they hook me up they'll put me on the treadmill for the stress test. Between my already low oxygen saturation and my back I'm worried that I'll either pass out and fall...or that my back will give out and I'll fall. I think I'm more concerned about falling than I am about any possible cardiac issues. I mean I'll be in a building full of cardiologists so I'm covered with that but they can't do much about broken bones. I get lightheaded just walking which is part of the reason I use a cane. I'm babbling because I'm nervous. Anyway, keep a happy thought for me.

Deb

[what2craftnow]

Sending you all the positive vibes and good thoughts I can Deb! Will be thinkin' of you and praying all goes well for you. Hopefully this will give those pesky Dr's. the info they need to get you back on track.

Stay strong and Be well GF!!!

Huge hugs to you!

[woodland_miniatures]

Right there with you, Deb, now, during and after. I also had one of those years ago, when I weighed an outrageous amount and simply couldn't walk far enough/fast enough on the treadmill without chemical heart stimulation. I, too, was worried about passing out and/or falling, SAID so, and sure enough a few minutes into the thing I got a "weird" feeling, said "Whoooo....." and believe me, I had three people sitting me down right then and there, no fooling around about it, and injecting the counter agent. Felt fine within a minute or so, thank God, and was deeply grateful they'd been watching me like hawks.

Deb, tell them your concerns right up front, loud and clear, and I think you'll be okay. You wouldn't be the only one in those circumstances with those concerns - they've seen 'em before and know how to help you through them. And if you DO feel "weird", SAY so, don't be shy about it!

You'll be first and foremost in my thoughts today, my friend!! {{{{{{{{{Deb}}}}}}}}}

[havanaholly]

Oh, Deb, you know you're in MY prayers! Do like Mary suggests and tell them your concerns right out front. Keep us informed.

[Starfire]

Hope you get the answers you are looking for finally! My thoughts are with you.

[LLyn M.]

Add my thoughts and prayers for you too. And I hope you and your family have a

very nice Thanksgiving!!