Surgery...

Sending prayers and vibes for a speedy healing for you
...just a thought - have you considered giving up wheat and eating organic?? I have been going thru autoimmune problems for years, including losing teeth from my own body attacking those teeth with root canals/crowns and needing them pulled (kiss over $16K good-bye for nothing ). but since giving up wheat and limiting iceberg lettuce, my diverticulosis is under control; my swollen joints have resolved; and my pains have gone away. It's a tough give up (I had pizza and cookies during the East TN meet-up) but worth it. It was recommended to me by a nurse practioner, not by my doctors, but it's really helped I would only hope and pray that you could find such relief - because your problems are much more severe than mine and I can't bear the thought of the suffering that you are going thru - you always have such great posts, you truly are a good-hearted person (which, IMO, is why your furkids are so good to you )

Originally Posted by catsknowme

Sending prayers and vibes for a speedy healing for you
...just a thought - have you considered giving up wheat and eating organic?? I have been going thru autoimmune problems for years, including losing teeth from my own body attacking those teeth with root canals/crowns and needing them pulled (kiss over $16K good-bye for nothing

). but since giving up wheat and limiting iceberg lettuce, my diverticulosis is under control; my swollen joints have resolved; and my pains have gone away. It's a tough give up (I had pizza and cookies during the East TN meet-up) but worth it. It was recommended to me by a nurse practioner, not by my doctors, but it's really helped

I would only hope and pray that you could find such relief - because your problems are much more severe than mine and I can't bear the thought of the suffering that you are going thru - you always have such great posts, you truly are a good-hearted person (which, IMO, is why your furkids are so good to you

)

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I actually have done several different food related/elimination diets over the past few years to see if I could get any relief....nothing has really worked. I did a complete celiac diet for a while there when the doctors thought I had celiac disease (thankfully I didn't!) but the entire thing was wheat/glut. free. Unfortunately, it didn't improve anything.

At the current moment my GI doctor & surgeon want me on a temporary diet of refined starches/white breads/rice/etc vs. whole grain to help with the inflammation/etc...so that's what I'm trying at the moment.

For the past few months what I've been doing is keeping a food journal complete with times I ate, amounts, and side effects- I did one a few yrs back and it helped, so I thought I'd give that another shot with all of the stomach issues. So far, I've learned more about what I can/can't tolerate thanks to the food journal than anything else. I'm just praying I can get relief soon. I'm miserable. My stomach pain is better overall (thank goodness!), but I still am getting ill almost hourly reguardless of what I eat (bland or rich..). I'm just trying to stick to small portions of blander food right now while this flare up is happening. I take my food journal to every doctors visit, so hopefully that helps out a bit. I go back to see the GI doctor on the 11th (they're gonna do another test fo C.Diff when I go back -should have my antibiotics finished up by then).

My cough is absolutely no better though, so I might go back to the family physician soon if I can't get any relief. I appreciate the prayers/vibes Please keep them comming. I really dont' want to have to go back to another doctor, so I'm just praying this stuff clears up soon!

Goodness, I didn't want to read that you're not getting any better yet, at least with the coughing! You don't seem to be able to catch a break with all this!

Sending more healing vibes your way!!

Originally Posted by DarkMavis

Goodness, I didn't want to read that you're not getting any better yet, at least with the coughing!

You don't seem to be able to catch a break with all this!

Sending more healing vibes your way!!

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Thankyou for the vibes I'm going to call the family physician tomorrow. I'm still no better and still can't get any relief from the coughing reguardless of medicine (cough syrup/pills the doctor ordered or breathing tx's). I haven't slept through the night in well over a week and last night I was up every hour with coughing fits and gasping for air. I think my immune system is honestly just shot so I really wouldn't be surprised if I've got something else like a pneumonia going on right now since things haven't improved with proper medications/etc. (I've also been supplementing vitamin C as well). My stomach doesn't seem to be improving eithor, so maybe a second opinion wouldn't hurt.

I'm going to make an appointment tomorrow before things get any worse. I've put it off all week in the hopes that things would improve, but I think it's time to go back before anything gets worse. Thankyou again for the vibes

Quick update: I was able to get in to see the family physician earlier today. They did chest x-rays and while it showed an elevated right hemidiaphragm (same thing the CT scan showed several weeks ago in the ER) and the doctor said that it's likely due to phrenic nerve damage (most likely a result from the heart surgery back in August- he said that this could explaine the shortness of breath and me using 4-5 pillows to keep my head proped up at night...but since I was having those issues before the work was done on my heart, I think that's a question I'll bring up at my next cardiologist app. in November.) Anways, the good news is that there was no pneumonia present!

He checked my other levels and said he thinks that I'm still just fighting off a a viral bronchitis and that it's just going to take a while for me to heal up because my body is already dealing with recovering from the heart and GI issues. He gave me a few new prescriptions today to help with the cough/etc and a steroid shot to help me get some more immediate relief. Hopefully I'll improve soon and get over this crud! / I also started a probiotic (generic of flora q) to help with the c. diff hopefully.

-Bit of an update...as of this morning I have a flippin UTI (I've had them plenty of times in the past, so I'm 100% sure that's what's going on). I've called the doctors office and I'm waiting to hear back about what I should do. I am miserable, I just want my body to chill out for once so I can get back to normal. I'm not even sure if I can take anything else antibiotic wise to clear up the UTI because I don't want the C.Diff to get worse. Please pray he can give me something that works and won't aggervate the other issues. I really don't want to go back in to the doctors office...I was just there yesterday I'm hoping they'll just call something in. (The nurse said that sometimes when patients have a compromised immune system like in my case, UTI's are easier to get.)

Just saw this, WOW you are going through alot right now.

I hope everything clears up soon!

Originally Posted by KatKisses

Just saw this, WOW you are going through alot right now.

I hope everything clears up soon!

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Thankyou I'm trying to hang in there and tough it out, but I'm definitely a little frustrated. I'm praying things look up soon so I can get back to normal.

I went to the doctors office on Wednesday and she gave me medicine for my UTI (so far the antibiotic she gave me doesn't seem to be making the C.Diff worse (my stomach is the same for the most part- still getting sick often, but it's not become worse, so I'm not worried- I go back to the GI doctor on Monday for my checkup) - I'm taking probiotics too, so hopefully that helps. The UTI is definitely better though!) She also pulled up my x-ray that the other family physician had done the last I was in there (he is not my normal family physician, she is. I only saw him because she wasn't in that day and I was ill). When my regular family physician pulled the x-ray images, she was really alarmed that the other doctor had not ordered a CT scan. She showed me the x-ray and how high up my right diaphragm was into my lungs- she showed me exactly why I was having trouble breathing- my right diaphragm area is stuck soo high up into my lung that it can't move up and down when I breathe so it makes things difficult. While I was there, she had them do a few PFT tests on my lungs in the office as well (the results weren't so great on those eithor). The doctor said that over 60% of my lung function is gone from my right lung right now which is why I'm having such a rough time breathing, moving, and laying down,etc.

She ordrerd a CT scan on my lungs to be done at the hospital, and I had that done on Friday, (I should hear back from the doctors office on Monday- the results are going to the family physicians office and to my cardiologists office). Hopefully I will be able to get some good answers and the help I need to feel better. The family physician switched around some of my medicine during my visit as well and I've done a little better since then thankfully, so that's a small improvement! (the coughing is definitely better!)

My main issue is still shortness of breath, gasping for air when I lay down to sleep (even with my head elevated), and not being able to move or bend without stopping breathing (so a little scarry!). From what I've read, those are all normal symptoms with Unilateral Phrenic Nerve Palsy which is what I have thanks to the heart surgery complication. I've read mixed things and heard mixed things from different doctors- some say that it can heal on its own in less severe cases and that it can take 1-2 yrs. Some say the damage is permenant depending on how bad the hemidiaphragm area was damaged, and there are two ways to help that (one is a surgery where they lower your bad diaphragm area down and stitch it down so that you are able to have a bigger lung volume/etc. another option is a pacemaker that can help stimulate your diaphragm to move up and down in less severe cases.

At this point all I know is that the doctor said I've lost 60% lung function on the right side and that I can't breathe well. I'm going to stay positive and see what the CT results are and what the specialists have to say. I'm praying that the condition will heal on its own in a short amount of time and that I won't need any kind of surgery/etc.

Holy cow!!
You have alot going on right now with your health. I think one of the biggest things you can do is to stay positive throughout all of these issues. I think you are a positive person to begin with.
Have you ever tried to sleep in a recliner vs a bed?

Oh Nikki! !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Originally Posted by GailC

Holy cow!!
You have alot going on right now with your health. I think one of the biggest things you can do is to stay positive throughout all of these issues. I think you are a positive person to begin with.
Have you ever tried to sleep in a recliner vs a bed?

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Honestly Gail, I'm thinking of trying to sleep on my loveseat at this point! It reclines and I'm desperate. Jack stayed over last night and we went to bed at a decent hour since he had to be at work by 6am to open. I woke up gasping for air at 2am, 2:43am, and again at 4:10am...I finally just said "forget it" and decided to get up and make breakfast in bed for Jack and I. It was a good distraction for me and he was really happy to start off his day with a homemade breakfast. At this point I'm just trying to distract myself and stay positive like you've said. I'm normally a pretty positive person, but this illness crud has definitely been a test for my resolve. I'm determined to make the best of it though...I know I'll get better, I just have to be patient (and that's a tough task for me since I'm used to going 90 miles and hour and keeping a busy schedule...I guess at this point in my life God wants to teach me a lesson in patience ). Jack just left for work a while back, so I'm going to try and take a nap on the loveseat and see if I can get a better quality rest that way. I go to the GI doctor at 2:15 today for a checkup(I think he's going to restest me for C.Diff while I'm there too). I'm definitely going to mention the lack of sleep issue while I'm there. I have not slept through the night in over 2.5 weeks now and I'm simply exhausted. I think I would heal up much more quickly if my body could simply get a good nights rest. (When I talked to my family physician about this on Wednesday, she didn't want me taking sleeping pills since I'm having trouble breathing (and I agree!) so I'm going to ask my GI doctor today if it might be safe for me to take a supplement like Melatonin instead. It's worth mentioning at least...

Originally Posted by LDG

Oh Nikki!

!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

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Thankyou Laurie Those hugs and vibes are very precious to me right now. It's encouraging to know how much love and support I have from my friends and family right now.

Wow, that is scary that the other doc missed that in the xrays! I hope the CT scan comes back with good news, and that they can finally solve some of your complications soon!

Mega !!!!!!!!!!!!

Originally Posted by KatKisses

Wow, that is scary that the other doc missed that in the xrays! I hope the CT scan comes back with good news, and that they can finally solve some of your complications soon!

Mega !!!!!!!!!!!!

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Thankyou for the vibes

Once again, no rest for the weary....so I'm awake at 3:45am

Bit of an update: The CT results came back positive for elevation of the right hemidiaphragm due to Phrenic Nerve Palsy as well as atelectasis of my right middle and right lower lobes.- for my non-medical friends, the atelectasis, to make a long story short,means that the those areas of my right lung have collasped.

(I actually have a copy of the result in front of me- made several copies for my files/etc). The cardiologist has said that it should heal on its own (which means I shouldn't need surgery- but I will be getting another opinion from the pulmonologist for legal/medical reason.) The cardiologist also said that with pulmonary rehab, it can take 6 months to a year in most cases to recover from the Phrenic Nerve Palsy. I'm just praying I heal up completly and as soon as possible so I can get back to a normal life again!

I go to the cardiologist on the 21st and before that they're scheduling me for a Chest CTA as well. I am supposed to start Pulmonary Rehabilitation as soon as they get it set up (this week or early next week). I'm also going to see a pulmonologist soon as well- when I did my two clinical rotations as student respiratory care practicioner, there was an ICU doctor that specialized in pulmonology & internal medicine that I really liked. He was a very good teacher and always took the time to answer any questions the other students or I had about our patients, etc. Well, in a bit of good news- I called his office today and my cardiologists' office sent over the authorization there...so I will be able to get in to see a great pulmonologist that I already know and trust! I've seen him work first hand on other patients and I know I'll be in good hands with him as my doctor. So that was a bit of positive news there...just waiting for the actual appointment to get scheduled with him (hopefully I'll know tomorrow). I am still the same breathing wise- still having difficulty breathing and waking up all during the night gasping for air/etc....I've been told not to take any sleeping aids since I'm having trouble breathing so I'm just a bit of a walking zombie at this point. / (The bronchitis crud seems like it's going away now though, so thats good at least- I'm coughing a little less (I'll still have a cough from the other complications) and have a bit more of a voice now.)

As far as the GI stuff goes, the doctor wants to retest me for C.Diff, so I should have the results in a few days and we'll go from there. I'm praying it's all gone!

Nikki you have been through so much Good Health

I've been thinking about you this past week, hoping there's been some improvements. Well, your cough is finally going away, that's a great thing!

And it sounds like you will be in good hands with the pulmonologist, I hope he can get the ball rolling on your recovery!!

And then, I hope you can get some decent sleep!

It's good to hear that you are starting to feel better! Good luck with the new(er) doc!

I finally got some sleep!!!!!!!

I'm sooo happy I could scream! I finally got some rest Early this morning, I finally fell asleep around 5am after trying to lay down hours before that to rest & having no luck. Well, I slept from 5am until around 4:30pm! Almost 12 hours or uninterrupted rest! Thank the Lord! Yesterday my dad came over and he brought two new pillows with him for me to try (bless his heart, he knew I was not getting any rest and was trying to help). I'm not sure if it was the new pillows or my sheer exhaustion just finally giving in....but eithor way, I slept for almost 12 straight hours. I feel soo much better too now that I had some rest! The cough also seems to still be improving so that is good as well! It's about time I finally get to post a good update!

I go on Monday at 11 am for a Chest CTA at the cardiologist's office. Please pray it goes well. / My nephew Cooper is on fall break from now until next weekend, so he's going to be spending a few nights with me here and helping me around the apartment a bit, so I'm looking foward to the company!

The breathing/ shortness of breath/ UTI, and my stomach are still no better though, so for those of you who have been soo kind to send prayers/vibes, if you guys could pray for those things to improve, that would be wonderful Also, when I went back to the family physician's office yesterday, the tests were still showing that I had a UTI (and the culture/sensitivity test they did earlier in the week showed I was resistant to the first antibiotic I took for the UTI, so I have to start a new one today- please pray that it doesn't make the C.Diff worse! I'm still taking probiotics/yogurt, but there's still a chance the new antibiotic could aggervate things, so just pray it doesn't!) / My family physician actually knows the pulmonologist I'm going to be seeing as well so I was pleased that she seemed happy I was going to see him! That's always good The family physician is saying that due to the significant amount of elevation of my hemidiaphragm, she isn't sure if the Phrenic Nerve Palsy & the lung collaspe of my right middle/lower lobes will be reversible or not. All I can do is pray for good news from the specialists and that my body responds well once I start pulmonary rehab (probably next week)

Oh hun

Praying for you still!

Well I am very happy for you that you finally got some good meaningful sleep!

Now sending more healing vibes for the rest of you!

I had my Coronary CTA test done this morning. It didn't take long at all and the guy hit my vein on the first stick to check my blood and give me the contrast dye! I don't have the results yet, but I go to the cardiologist on Thursday, so hopefully by then I'll have some more answers. Thankyou everyone for the continued support and vibes It really means a lot to me!