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Anyone miss me?

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1 Anyone miss me? on Tue Aug 12, 2014 9:50 am

Crybaby

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I signed off here at 1:22 a.m. on July 22nd and two hours later, I was in the ER.  My heartbeat was like a trip hammer in my chest (192) and after lying down for 15 minutes with no change, I woke up Brian.  An hour and a half later, I asked Brian to take me to the ER, where they had a very difficult time lowering my heartbeat (it was going so fast, you could see it in my neck).

The next thing I remember was a week later, when I woke up in ICU in a different hospital where I was -- drum roll -- restrained by my hands and feet.  Turns out I was pretty zoned out and began pulling out all my tubing (lots of it plus transplant boxes on my face) so they had to restrain me.  Lots of the nurses who took care of me told me I had kicked them when they went to adjust my restraints  Embarassed 

During the course of my hospitalization, poor Brian was told I might need a heart transplant or a double lung transplant.  Then the priest came and gave me The Last Rites, which they now call the Sacrament of the Sick -- my poor husband!  Turns out I have pulmonary hypertension (PH) -- no fun, for sure, but I'M ALIVE AND I'M BACK!  

Came home this past Saturday, August 9, and it was indeed wonderful to walk back into my home!  While I was gone, my best friend of 43 years had my house cleaned by her housekeeper, the kind of woman who starts cleaning at the baseboard.  It was tidy as a pin AND it even smelled clean!  My last day in the hospital, Brian treated me to a lady who washed, cut and blew dry my hair.  Am I lucky or what?!   Very Happy 

The PH is no fun.  We have to mix a complicated medicine every single day of my life and then connect it to a pump which pumps it into my body.  Brian is really good at the mixing part and I prefer the pump part so so far we're doing okay.  We need to do the transfer from the old pump to the new pump within 5 minutes or the PH will "back up" and my symptoms will worsen by double, which is probably irreversible.  Scary, no?  Brian took SEVEN DAYS of lessons on how to mix the meds (minus one day off, poor guy) and I listened to all the lessons but actually only took two days of lessons.  The vendor RN who handles the meds had to certify that I was knowledgeable enough to release from the hospital (grrrrr!).  

Today I'm taking my first road trip -- while Brian goes to the PX to shop, I will be getting my nails done and having a nice relaxing very much needed pedicure!  The pump I have to carry is about the size of a VCR tape and I'm not thrilled about that but whatchagonnado?  

Talk to you guys later.  I've got to go get ready for the medicine mix (I watch him while he mixes to tell him, honey, you just touched your nose [in other words, clean your hands with the sanitizer before proceeding]), and only God knows how long it's going to take me to put makeup on.  

See you guys soon.  And, BTW, I missed you while I was gone!

2 Re: Anyone miss me? on Tue Aug 12, 2014 10:21 am

NormM

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Welcome back. Sorry to hear about all that. Scary.

http://r2j1cp@gmail.com

3 Re: Anyone miss me? on Tue Aug 12, 2014 10:26 am

JanaAZ


That's pretty scary. I'm glad you are learning how to deal with it and are now okay. Life is sure fragile, isn't it.

4 Re: Anyone miss me? on Tue Aug 12, 2014 10:39 am

bethk

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Admin
Goodness, Michelle ~ I thought you and Brian were just taking some time off.

People get busy, life gets in the way. I always think everything is just fine until I hear a story like yours. I am SO happy you are on the road to recovery. You are truly blessed to have Brian and good friends who care deeply for you and your well being, as well as medical personnel who got you repaired and on meds as needed.

Please keep us up to date. You'll be in my thoughts and prayers.

5 Re: Anyone miss me? on Tue Aug 12, 2014 12:51 pm

Barbara101

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Yes I missed you   

Speedy recovery wish for you. That is sure is some bump in the road of life. You have one great husband.

It is story like this makes you rethink of your own life road.Live today like it is your last comes to mind. Makes me really think I should get with my wants.You never know what the day will bring.

I am so happy you are on the mend..  

6 Re: Anyone miss me? on Tue Aug 12, 2014 4:54 pm

cookingirl

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Michele,
OMG! Yes, I was thinking about you....
wow.... affraid 
I know Brian will take good care of you.. and Lola also! cat 
You will get used to the pump and the meds.
My dad had to have an IV pump with a very strong antibiotic when he had blood poisoning. It was a pain, but it has to be done.
I got really good at 'priming' the bag!! lol

Getting out for a ride is a good thing. I am sure you enjoyed it.
Do not try to do too much..pamper yourself.
all I can say is:
     
take care...

7 Re: Anyone miss me? on Tue Aug 12, 2014 8:57 pm

Crybaby

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Barbara wrote:It is story like this makes you rethink of your own life road.Live today like it is your last comes to mind. Makes me really think I should get with my wants.You never know what the day will bring.

Thanks ALL of you for your kind words.  Yes, it was very scary (mixing the meds and getting the pump ready are STILL scary), and yes, I have the best husband alive.

I can't repeat what I'm going to tell you without crying so I'm glad you guys are THERE and I'm HERE.  A couple days after lucidity and awareness of my surroundings returned, and they stopped restraining me, a rather pretty RN came in my room.  She said, "I wanted to tell you how wonderful you look [trust me, I didn't -- I cried the first two times I looked in the mirror].  Do you remember me?

Me:  You look familiar but I've got no clue.  

RN:  I took care of you for the first three days in ICU.

After thanking her for doing so, she said to me: "Your husband wouldn't leave your side for three solid days. He loves you soooo much. To be honest with you, I've never seen a man love a woman the way he loves you!"

Needless to say, yours truly burst into tears hearing something so lovely. i'm going to write it down and read it every time I want to throttle him. I guess 37+ years together does indeed count for something.

At any rate, yes, Barbara, you're right. Anything can happen at anytime. And it usually does, too! Turns out it wasn't my allergies or a virus, and that my body had been dealing with this for some time. I think that ol' triphammer heart turned out to be a blessing indeed.

Live today like it's your last comes to mind. You are SO right.

8 Re: Anyone miss me? on Wed Aug 13, 2014 1:52 am

Imelda HL

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I'm sorry for what happened to you Michelle and I'm glad you are recovered and back at home now.. Brian really is wonderful..

9 Re: Anyone miss me? on Thu Aug 14, 2014 11:50 pm

Bugster2

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PH is no laughing matter. God bless you for your strength.

10 Re: Anyone miss me? on Fri Aug 15, 2014 10:37 pm

UNCLE JIMMY

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Oh! Lord! .... God Bless you Michelle. Tina and I will put you in our prayers. And Brian too.
He is a guardian prince.
Rest easy, and take care.

Jimmy & Tina

11 Re: Anyone miss me? on Sat Aug 16, 2014 8:29 am

Crybaby

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Thanks Imelda, Bugster and Jimmy for your kind words.

Am having a lot of trouble with severe headaches and nausea  pale  -- both side effects of the medicine I have to pump into me every day -- so prayers are still welcome!  

I'm moving around a bit but still get tired really quickly.  I hadn't realized how almost three weeks in the hospital would take so long from which to recover.  I'm hanging in there, though.

And yep, I have the greatest husband in the world.  Always knew it, and will always know it!   sunny 

Best to all of you,
Michelle a/k/a Crybaby

12 Re: Anyone miss me? on Sat Aug 16, 2014 10:44 am

Bugster2

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I had an acquaintance whose DH got PH at age 30. He had a H&L transplant and was back to work as a policeman within a few months. His PH was genetic in origin. Did the MD's give you an idea what caused yours? I know, 20 years ago, there were quite a few people getting it from that diet pill.

13 Re: Anyone miss me? on Sat Aug 16, 2014 9:00 pm

bethk

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Admin
Crybaby wrote:Thanks Imelda, Bugster and Jimmy for your kind words.

Am having a lot of trouble with severe headaches and nausea  pale  -- both side effects of the medicine I have to pump into me every day -- so prayers are still welcome!  

I'm moving around a bit but still get tired really quickly.  I hadn't realized how almost three weeks in the hospital would take so long from which to recover.  I'm hanging in there, though.

And yep, I have the greatest husband in the world.  Always knew it, and will always know it!   sunny 

Best to all of you,
Michelle a/k/a Crybaby

Good Gracious, Michelle....if you get tired ~ STOP. REST. TAKE A NAP.

Ain't nothin' in the world that can't wait until later.

Keep crackers close by so if you start to feel the nausea coming on you can nibble on the edge of a saltine. Sip just a bit of water with it. Wear sunglasses, even in the house to help with the headaches. And just pull a pillow over your face to keep out the light if it gets bad.

You will continue to be in my prayers. God Bless.

14 Re: Anyone miss me? on Tue Aug 19, 2014 10:29 am

Crybaby

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Bugster2 wrote:I had an acquaintance whose DH got PH at age 30. He had a H&L transplant and was back to work as a policeman within a few months. His PH was genetic in origin. Did the MD's give you an idea what caused yours? I know, 20 years ago, there were quite a few people getting it from that diet pill.

No, not really, Bug. It appears that the sarcoid I had in my lungs back in 2007/2008 damaged my heart a bit so they're unsure but some of my doctors feel that overall, the sarcoid had something to do with it.

Never took any of those "infamous" diet pills, either.

15 Re: Anyone miss me? on Tue Aug 19, 2014 10:37 am

Crybaby

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Beth wrote:Good Gracious, Michelle....if you get tired ~ STOP. REST. TAKE A NAP.

Ain't nothin' in the world that can't wait until later.

Keep crackers close by so if you start to feel the nausea coming on you can nibble on the edge of a saltine. Sip just a bit of water with it. Wear sunglasses, even in the house to help with the headaches. And just pull a pillow over your face to keep out the light if it gets bad.

You will continue to be in my prayers. God Bless.

Well, Beth, I get tired but am supposed to move around as much as I can, which I'm doing. I don't do too much but it's just that it takes a lot of energy to move around after laying down for over two weeks.

Also, not to get too specific, but the nausea is WAY past crackers and chipped ice if you get my drift. The type of headache that the medicine brings on goes from me laughing and talking to a 9 or 10 (on a 1 to 10 scale) headache in a second or two. I'm now taking something for nausea which is working very well but just need something for the headache pain (and leg pain) which the meds bring on. Have a call in and am waiting for a callback.

Thanks for the prayers. I really need them!  silent 

16 Re: Anyone miss me? on Tue Aug 19, 2014 10:40 am

Crybaby

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Norm, I just love your new avatar! You look super!

17 Re: Anyone miss me? on Tue Aug 19, 2014 11:10 am

Bugster2

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From one who has suffered with nausea etc for the last 42 years, I feel for you. Thank heavens there are some meds that are working for you. Nausea is so debilitating. A person can function with so many things that hurt but nausea is a whole different matter. Sometimes sound is unbearable when you are sick to your stomach.
Did the doctors say if your body would adjust to the meds so the headaches and nausea would eventually go away?

18 Re: Anyone miss me? on Tue Aug 19, 2014 11:58 am

Barbara101

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A little off topic here but..When I was pregO with my son, I had to go on bed rest for almost 6 months.I did not get up much & then got a butt sore.ON MAN>>That thing liked to never healed.So move around a good bit so you not have to deal with too.

My Mom got one on her heel while in the nursing home.. Ghezz a nightmare ..

19 Re: Anyone miss me? on Wed Aug 20, 2014 8:13 am

Crybaby

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Bugster2 wrote:From one who has suffered with nausea etc for the last 42 years, I feel for you. Thank heavens there are some meds that are working for you. Nausea is so debilitating. A person can function with so many things that hurt but nausea is a whole different matter. Sometimes sound is unbearable when you are sick to your stomach.
Did the doctors say if your body would adjust to the meds so the headaches and nausea would eventually go away?

Not yet, Bug. The meds we mix and pump into me are increased just about every single day. Yesterday, the RN at the hospital told me to stop increasing the dosage of the pump's medicine until I see the doctor on 9.9.14. Yippie! That's cause they refused to give me any kind of pain pill for the very painful headaches though I did get something for nausea which works (I had an Rx for nausea meds in the hospital and an old Rx at home that I was taking so I knew it worked). I've been occasionally taking one of Brian's pain pills (he has a script for major back pain) which works really well but I don't want him to run short. I guess I'll see what happens when I go to the doctor on the 9th.

I know exactly what you mean about nausea being debilitating...

20 Re: Anyone miss me? on Wed Aug 20, 2014 10:57 am

Bugster2

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What meds are you using for the nausea? I have a hard time taking pills and when I am sick the last thing I want to do is to try and swallow something.

21 Re: Anyone miss me? on Wed Aug 20, 2014 11:06 am

Barbara101

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Not to but in, but I a have always got car sick & motion sick.Inner ear thing.can not do boats or as a kid fair rides.I can get car sick even when I am driving.So nausea is something I know about. However..

Might not be the same for you guys but for me what works better then anything is Ginger Root Capsules.Ever since I started them I do not get nausea.

22 Re: Anyone miss me? on Wed Aug 20, 2014 12:20 pm

Bugster2

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Ginger gives me a terrible stomach ache, along with raw onions, mustard, paprika, chiles. Strange isn't it?

23 Re: Anyone miss me? on Wed Aug 20, 2014 12:50 pm

Barbara101

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capsules are safe with me. I do not use ginger of any form in my food or cooking .I just do not like it.

24 Re: Anyone miss me? on Wed Aug 20, 2014 1:22 pm

UNCLE JIMMY

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Michelle.... Honey is one of the great natural healing foods for the stomach.
Try and get some good local honey, and I didn't believe it, but DD came over one day, and I felt sick to my stomach. It wasn't from eating, but was just over ejection of bile.

She said,"Dad, take a Tbs. of Honey, and nothing to wash it. Just take small sips.
I could not believe it. It actually stopped the sick feeling, and 10 minutes later, a gas bubble came up (burp*) .... It is rare that I get upset stomach (nausea), but when I do, I will take the honey.
Honey is the only food that does not need refrigeration, and does not spoil. It may turn to crystals of sugar, but never spoil.

What I don't understand, is why they refuse to give you meds for the headaches???

If you are taking some you have on hand, to spread them out (ration) cut them in half, and see if it gives you relief.
We are praying for you to feel better. God Bless You!

25 Re: Anyone miss me? on Wed Aug 20, 2014 1:44 pm

Bugster2

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They also suggest Coke syrup and an over the counter product called Emetrol. Even a little bit of coca-cola helps. They all have high concentrations of sugar which in some cases can calm nausea. What is really strange is that there are different kinds of nausea but they all make you feel awful.

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