Update On Vandy, Hubbys Open Heart Surgery, And Me

[hilbiligrl]

wow... ladies... its been about 5 weeks now and its been a **** of a 5 weeks. Lets talk about vandy first, and as most know, if you read other posts of mine, you will know which autonomic specialist i saw and because of my negative experience, i will not mention his name in this particular post. I went to vandy hoping for many autonomic tests, that was what i was told. I was expecting a full day of tests. We went, stayed overnight, was there at 8 am. I ONLY had a 35 min test, one was breathing (which i felt like i was dying and it sent me into a spell, but didnt seem to effect my heart rate, but bp remained low), and of course they done a 5 min.... 5 MIN ONLY POOR MANS TILT TABLE TEST. AND THESE ARE THE ONLY TESTS THEY WOULD DO. My hubby and i waited all day to hear from Dr. you-know-who and finally came my appt with him. I was so hopeful. He was a complete arrogant ***. I liked him as a person, but as a doctor, no. He flat out and told me it was impossible to urinate 32 times a day... then went on to say that several of my 8 years of symptoms were flat out lies and said my autonomic testing was normal. Well, let's see.... 35 mins total of testing tells him all this that he needs to know??????? I looked at my husband for support or for him to take up for me.... notta. I am still so very upset with hubby for remaining silent, while i took an arrogant bashing from this doc. Basically i was told, he can't diagnose me with DYS... but he would safely say, i could have DYS AS WELL AS CFS. But recommended i needed to be tested for seizure activity during my severe attacks. Otherwise, he said my insomnia was causing this, then when i said, been there done that, already assessed and it wasnt that... then he just jumped from one thing to another. When he asked me a question, before i could answer it, he was answering it for me and going on to another question, over and over again. It was a scene from a nightmare and i was wide eyed, mouth on the floor, looking at hubby for help cuz this guy had me so confused with one question, that i couldnt get to others as my mind couldnt think fast enough.

All, in all, i got nothing from them. Wasted money, wasted trip, wasted time. I left inconsolable. This doc clearly wasn't out to help me in any way and his arrogance was absurd. although, as a person, i did like him... i just hated how he treated me and talked down to me and accused me of lying aobut several symptoms.

My new integrative doc finally did prescribe me klonopin for a couple of months to get me thru hubbys open heart surgery...... he and i are still trying things for me but not much improvement.

Over the past 5 weeks, hubby had open heart surgery.... went much longer than thought, lost lots of blood, rough, rough recovery. They replaced his aorta going down into the heart and put in a metal aortic valve. He was in cardiac intensive care for 7 days and during that time had to be shocked back into rythym due to a dangerous atrial fibrilation going on. Was scary. after getting out for 3 days... back to er for another shock and another 3 day stay in cardiac intensive care.... this repeated 2 more times. So, in 4 weeks, we spent most of time in cardiac intensive care unit.... had to be shocked 4 times and one time he went code blue.

Now, during all this, his verbal abuse/anger was/is horrible. His family treated me like trash cuz i left for 2 hours one day to go home and take shower. I was with him every moment, every moment. had him screaming and cussing me in the hospital, and his sister doing the same when i went home after staying over 36 hours the first day/two. Put it this way, i walked out of the hospital crying twice for a whole day due to his verbal abuse and his family's verbal abuse. I done nothing to deserve such treatment and it still hurts and he has never said sorry. He allowed his sister to verbally abuse me in the ground and he told me to shut up when i defended myself to her..... bad situation.

So, during this time... im fighting my disease... whatever it is now.... and i took over the towing business.... I have handled all calls, dispatches, insurance adjusters, office, releasing cars to those who got impounded by police, i have even taken over the trucks and as a woman alone, have ran them and towed cars on my own and worked wrecks to keep the income coming in EVERY DAY. I do have a relief driver a few days a week, but i still handle all aspects of the business... insurance companies, salvage companies, going to office meeting people, collecting and billing invoices and trying to pick up some business along the way. NOT ONE THANK YOU FROM ANYONE, NOT EVEN HUBBY.

On the lighter end... we've finally been home from the hospital a total of 5 days without him having to be rushed back to be shocked again. Our bill, oh my, at least 200 thousand now.... have no idea how to go about that. Hubby's heart surgery has made him more of a mean man, and he is not a godly man, nor does he pray, but you would think this would have changed him.... notta.

As i was saying on the lighter end.... not sure how or why, but after several meltdowns and a close call with suicide from sheer desperation of the stress... my doc put me on klonopin and i was within 1 day able to calm to a point to handle it all very well, with a few small meltdowns over the past few weeks. Somehow i started to feel postive and good again and have energy for once and was able to go go go go. Felt good for few weeks, but the past 5 days, im struggling yet all over again and i feel the episodes and sickness come on fast, especially every morning..... im fighting it so hard cuz i have to tow to provide our income. I love to tow, love it... its me and brings out the best in me... but having this disease is so freaking hard. I met a woman, whom i towed in her car from a wreck and loe and behold we have the same illness and we got to talking what works for her and how she is down for days, then can go for a few days and so on and so forth. Anyways... today, im looking up things for energy.... i feel so physically aweful.... and hubby i still on a rage mostly everyday about something. i understand his world is upside down, but he could be nice ya know.

anyways.... after watching mack's mom's video on the chronic fatigue syndrome, it was so much like me, and i completely understand how someone ends up with suicide with this, due to how unreal this is. No one truly knows what we go through or how we feel every moment of our life. I never have a moment where i feel normal, or even halfway good. Gosh i wish i could find that 'regimen' for me. I guess, i'll keep on keeping on as best as i can, but its so hard. I just want to be well and get on with life, cuz these past few weeks of taking on the world, so to speak, feels so good all over and i want to continue with it, but the illness is creeping back up. I was thinking i was in a remission, hoping for a long one, but not now. and i just dont know how to fight this anymore. One good thing, is my integrative doc is standing by my side and listening to me and believing me.

Ok, i think i have to go on a tow.... better get.... much love to you all... hope all is well with everyone.

tennille

hilbiligrl

[lieze]

Big hugs.

I have a nurse friend who was diagnosed with dysautonomia years ago but passed her tilt.

It's possible to pass the tilt but still have it or be symptomatic.

And my husband is horribly abusive and it's worse since i'm ill. He mocks me and says why can't you just take a shower like a normal person.

My goal is to get strong enough to leave him.

Hang in there one day at a time.

Let's join hands and beat this.

You me God and our precious kids.

[hilbiligrl]

dearest lieze.... i am so with you. The verbal abuse is getting so much worse, its every day now, almost all day long, but then he turns it around as if i am the one who initiates it. Im a quiet nervous person who runs from conflict...lol, working hard on getting financial help for him, running the business, etc..... and the abuse is getting worse after this surgery. I can't even sit and have a nice talk with him about anything. Yes, i am trying to hang in there, and plan for a future without abuse... just don't know where to start with a disease where i can sometimes work, and sometimes not.... ugh. I feel for you lieze, we are in the same boat.... with no oars. sigh.... love ya gal

tennille

[lieze]

Yep here too he points it back at me.

I'm starting to think Asperger's on top of bipolar.

I just can't imagine anyone being so cruel.

I still cry even though I know the drill-it still hurts.

And I still grieve and feel pain everytime he runs out the door and says he's leaving me.

He really is a case and a half.

It certainly doesn't make dealing with the pots any easier.

Hugs!

[rach73]

Hi leize and Hilbiligrl,

My heart goes out to both of you. It must be so hard emotionally and physically to be so ill and have no support from your husbands. Husbands who are not only unsupportive but mentally cruel to you as well.

Hilbiligrl, I can't believe his family verbally abuse you as well. It sounds like he comes from a long line of bullies. I'm so sorry that you both aren't in a position where you can pack up and get away.

I wish there was something I could do to help both of you. Are there any organizations in the states that would help either of you? In the UK we have womens refuge - where you can stay with your children until you can get a place to live.

Sending you both lots of love

Rach

[juliegee]

(((((Tennille)))))

I have been wondering about and praying for you & your husband. So happy he's made it (YAY!!!) & seems to finally be recuperating well. You two have been through the wringer. I am so sorry for how hard things have been for you, Tennille. I am awe of your ability to juggle so juggle so much and still be standing. You should be so incredibly proud of yourself- I am

I HATE that Vandy was such a bust. You were so counting on that appt. for a definitive DX and treatment plan. Your description of the doctor involved was more than generous. You are right. It could have made a big difference if your husband was able to advocate for you. In his very precarious state, he may have done the best that he could... So glad you have the klonopin. It's helpful to many in calming down the sympathetic nervous system.

I am also saddened by how grouchy your recuperating husband has been. It's part and parcel (for many) of dealing with a life threatening major trauma- not to mention the repeated life-threatening complications! Doesn't make it any easier for you ...and his family could certainly be kinder to you. You definitely deserve it.

I am glad that the CFS Movie I recommended has resonated with you. Some parts of it, I liked, other parts were lacking; BUT they did a good job of portraying the desperation so many of us with chronic invisible illness face. Suicide was a solution for some in that video, but I pray it is not a serious option for you, Tennille. I hope there are good people in your life: your family, your friends, helping professionals, suicide hotlines, etc. that you will avail yourself of. There is so much good in the world, Tennille. You are a part of that goodness. Your children, and many others, need you beyond your understanding. You are their whole world.

We love and support you here, sweetie. You've gotten through the worst of your husband's surgery. The recovery phase, cardiac rehabilitation, etc. will go on for months. Settle in for the long haul, keep working on taking the very best care you can of yourself and your family.

Thank you for taking the time to keep us informed. Better days are ahead.

Gentle healing hugs-

Julie

[issie]

There are two possibilities as to why your hubby is acting so awful. Every heart surgery patient for some reason gets more or less intolerable. It changes their personality (for a while). For some reason the irritable, grouchiness comes out. Also, for some people - pain meds does them that way. It's best for them to get off the pain meds as soon as possible. They don't even realize they are doing it. They seem to be in control - but they are not and then won't even remember how they acted or what they say. It's wild how this particular surgery and pain meds affect people. Sorry for the difficulities that you're going through and hoping that time will bring better times to you.

[Sarah4444]

Sorry that things continue to be so difficult, Tennille. I was so disappointed for you that your Vanderbilt appointment didn't turn out to be helpful. What symptoms did he accuse you of lying about? It makes me wonder if some of them might have been mast cell related - some of the things that people on the mast cell sites report do sound kind of strange. If you have time, it might make you feel better to go to a masto forum and read some of the stories and symptoms.

I hope that once things settle down a bit your husband comes to his senses. You don't deserve to be treated poorly.

[crowebirds]

I want to encourage you about your husband. There is hope for him. My husband was the same way for the last six or so years. He became very abusive verbally and very controlling. On three occassions he had to stop himself from hitting me during an argument. I prayed desperately for God to change him. Keep in mind that God gives us the prompts to change, but it is up to us to change. There were so many times that I was ready to walk out and leave him, but with my daughter's health problems it was not a good idea. His mother hated me too. She too was verbally abusive.

During one prayer for change in my husband I asked God to make the action personal to my husband, in a way that there was no way he could blame me. My husband would have to know that God was getting his attention. Within three days his truck was stolen while he and my daughter were out shopping for Christmas. He loved this truck more than me. It hit him hard. I gave God time to work on him. I kept praying. I stayed with my husband while his Dad was sick in 2006. I planned on leaving when He got better.

God really had to do a lot to get his attention. His dad died in 2007, two weeks later my husband had his first heart attack. His heart cath and stinting went without complication. A follow up heart cath with stinting nearly took his life. He had to be resuscitated continuously for hours. His brain was deprived of oxygen for a period of time. He had another heart attack in the hospital. Every since he has had heart rhythm problems. His mother died in 2009 and in 2010 he had to have a pacemaker put in. The rhythm problem never improved. This year he had open heart for double bypass. The widow maker vein was 100% blocked. No problems during the surgery, but complications afterward led to a bilateral fatal blood clot in both lungs. One lung was completely blocked and the other 90% blocked, most are dead with much smaller blockages. He was allowed to be alive only by God's grace. The doctors fixed this and then he had a urinary tract infection. This led to an infection of the heart. The Doctors could not have fixed this without God's grace.

Okay, that is it, God got his attention. He is now a totally different man. He will always have heart problems, but so far, everything is much better. He asked for forgiveness for the way he had treated me. He couldn't believe that held in as long as I did. As it turned out, it was the heart blockages and rhythm problems that initially changed him to be so aggressive and ugly towards me. Let me share one thing though, God didn't just change him, he changed me too. It is a long hard road, but keep praying, trusting, and be ready for the change when it comes.

My prayers are with you.

[crowebirds]

I wanted to add to my previous post. While my husband was at the point of death three separate times this year, I trusted God and chose to trust the outcome. I chose to not worry. My husband came home from his infection doing well, and it was like great, I can go back to being the normal me and everything being wonderful; he was alive, a changed man. I kept working through most of it, kept my daughter in school and in private lessons all to keep the normalcy of life.

I never realized that I would go through a depression over it all. My body and mind were totally drained. I still had to deal with emotions that I did not realize were hiding in the dark just waiting to come out. My husband was out of work for two months going through all this. I missed a couple weeks of work. There was very little money during this time. Despite this, I had to take some personal time, just to myself to de-stress. I came back healthier, stronger, energized.

Not only do you have a debilitating condition, but now you are dealing with all the overload of having to work, care for your spouse, dealing with the in laws and their emotions and taking care of the rest of your family.

Allow yourself to go through these emotions, the draining, the grief. Allow yourself a time a rest so that you can get as much of your energy and strength back as possible.

Ask for help from your church, your friends, get some people to help out that live close by. Trust God, he will protect your finances and your during this time of recovery for both you and your husband.

I know your husband may not be ready to say it, but I will say it for him. THANK YOU! for being such a great, loving person. You have been a trooper through it all. My prayers are with you, your husband and his family for reconciliation.

[Lovebug]

Hi Tennille,

I, too, have been thinking about you, worrying about you, & praying for you & the hubby. I'm so glad things are finally starting to settle for you. Hang in there. And please know that heart patients often have problems with their anger and they turn mean. I lived through it with my dad & my husband lived through it with his dad. Also, as a nurse, I've seen it from my patients. It does get better in time so take heart. Also, keep looking for a doctor that will treat you right. When I first got sick, I went to Mayo in Jacksonville and that doctor told me "if you tell yourself you are sick long enough, you'll be sick".....I was deflated thinking I had done this to myself. So I did what he recommended: exercise, exercise, exercise. I did strenuous exercise for over 8 weeks. Then my symptoms got worse and I knew something was really wrong.

We love you, keep us updated.

[issie]

TLC's mom,

Well written, lovely and heartfelt. Very touching! It is amazing what faith, endurance and love can do for us.