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'Tis Maggie



Joined: 20 Jan 2012
Posts: 365
Location: Bellefonte, Pennsylvania

Post Posted: Thu Oct 15, 2015 7:24 pm Reply with quote    Back to top    

Robac, any news? Are you still not feeling right? What did the doctors say?

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Maggie
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robac



Joined: 08 Jul 2011
Posts: 56
Location: Oakville, Ontario, Canada

Post Posted: Thu Oct 15, 2015 8:29 pm Reply with quote    Back to top    

So...I was not imagining things. (But everything is working out anyway.)

Apparently some time recently I had some blood clots in my legs that migrated to my lungs. Once they got there they broke apart and blocked several smaller arteries. That explains being short of breath. Suddenly 10-20% of my lungs were not transferring oxygen to my blood.

I spent 3 days in the hospital where I had:
- Chest Xray
- Contrast CT of my chest
- Ultrasound of my entire legs
- 45 minute cardiac ultrasound (to make sure the clots did not move past my lungs into my heart)

I was immediately put on some heavy blood thinners. So much that I am still not allowed to shave (any cut will just keep bleeding). Since the dose I currently need to have is so high, I have the fun job of giving myself a shot of heparin in the stomach twice a day.

I am back to the hospital tomorrow for another assessment and get some planning information. They say after 3-6 months of blood thinners the clots should be broken down and I should even get my lung function back.

Overall though, only a total of 6 days in the hospital since I was released after my transplant 3 years ago is not too bad.

'Tis Maggie - Thanks for checking up on me.
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robac



Joined: 08 Jul 2011
Posts: 56
Location: Oakville, Ontario, Canada

Post Posted: Sun Oct 18, 2015 9:38 pm Reply with quote    Back to top    

So, my family doctor was genuinely surprised that I was still alive. That kind of thing freaks you out.

I knew pulmonary embolisms were bad, but the more I read the less I want to.

15% of all sudden deaths are due to pulmonary embolisms. It hits you, you die.

So...how do I react?
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'Tis Maggie



Joined: 20 Jan 2012
Posts: 365
Location: Bellefonte, Pennsylvania

Post Posted: Tue Oct 20, 2015 6:19 pm Reply with quote    Back to top    

That's scary stuff, Robac! I'm on blood thinners too - what a pain in the neck medication!

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Maggie
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robac



Joined: 08 Jul 2011
Posts: 56
Location: Oakville, Ontario, Canada

Post Posted: Thu Nov 05, 2015 10:12 pm Reply with quote    Back to top    

What is next is to carry on. I have seen all the annoying shirts with the carry on theme, but for all of us it is true.

Like they say in Shawshank, get busy living or get busy dying.

All is good now, which brings up an issue. Am I fine, or am I disabled. While I would really appreciate a wheelchair sticker, I think that would be greedy.

I am going with fine.

Which brings me to another thought, I want to be productive, but at the same time I want to be regarded as "challenged". So how do I approach it?

I had my semi-annual review today, my boss says I am awesome.

Should I just leave it at that?
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'Tis Maggie



Joined: 20 Jan 2012
Posts: 365
Location: Bellefonte, Pennsylvania

Post Posted: Wed Nov 11, 2015 9:28 pm Reply with quote    Back to top    

I think you should keep going with an emphasis on the "fine" This is your new norm. How we are is kind of a tough thing to answer. How am I compared to 15 years ago? Lousy! How am I compared to last winter when I had a lung infection which kept me in the hospital for a week? Pretty darn good! It's wonderful that your boss thinks you are awesome - way to go!

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Maggie
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robac



Joined: 08 Jul 2011
Posts: 56
Location: Oakville, Ontario, Canada

Post Posted: Thu Aug 18, 2016 1:22 pm Reply with quote    Back to top    

Here I am 4 years post transplant. I am now more worried about my sister than myself. Her last PFT showed a TLC under 2L.

She is waiting for her transplant listing.

In other news, I was wondering if anyone has had "fuzzy" moments. Times when looking back, I have no memory of.

I figure it is just my new normal, but I can't help but think it is a degradation of my mental levels. IPF was bad, but not remembering yesterday is really freaking me out.

As always, thank you all for your support.

Rob
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BrendaJ



Joined: 16 Jun 2011
Posts: 745
Location: Canada

Post Posted: Sat Aug 20, 2016 10:11 am Reply with quote    Back to top    

Hi Robac:
I don't know how I missed your posts from last year. Could be because I was going through similar- blood clot in my leg and a kidney stone I didn't even know I had. I too had to give myself shots in the stomach but also had to worry about kidney stone causing bleeding. After 2 months of being watched closely, the blood clot dissolved and after laser treatment and 5 months the kidney stone went. Unfortunately, they say kidney stones come back, so having to watch for that. But it was all quite time consuming. But have been good (fingers crossed) since last February. I was fortunate that the blood clot did not go to my lungs. You have done well.
I have "blank" moments where I can't remember something. But I remember shortly after. I found it does come back. I was involved in a research project regarding anesthetics and how they affect peoples memories. It does affect the memory and the longer you are under the more affect. When you consider the average surgery is 1-3 hours and we undergo surgery that is like 10-16 hours- well that speaks for itself. The research was to see if memories get better over time after the surgery and how different kinds of anesthetics act.
I have not heard the results, but I think some of it comes back.
I did crossword puzzles to challenge my brain after the surgery and had trouble with my memory, but have no trouble at all now. Kind of like retraining your brain.
I will be 2 years out in November.
I have lost a couple of friends who have had their transplants since mine. It is always sobbering and another has developed cancer. Just keeps reminding me to "live in the now". Happy that I am here for my family today and hopefully tomorrow.
Sorry to hear about your sister, I have a friend just going on the list now. I have been watching the list for the past couple of years and they seem to be getting them faster than when I got mine. People are more into being donors than they were before. That's a good thing.

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Diagnosed in '08. IPF/UIP , lifetime non-smoker.
Lung Transplant Listed Jan/14
Transplanted Nov/14
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robac



Joined: 08 Jul 2011
Posts: 56
Location: Oakville, Ontario, Canada

Post Posted: Sat Dec 17, 2016 4:57 pm Reply with quote    Back to top    

Brenda , thank you for the stories. I am one of the few that had kidney stones before everything else. They are nit fun. I have developed about 3 since the transplant. On the bright side prednisone is really good for stones.

I have been off the forums for a while as my sister has had to deal with progressing IPF. Both parents and now 2 siblings. As my title suggests genetics are an angry bastard.

My sister showed symptoms out of the blue, not infection or cause, just a bad x-ray.

She got her transplant on Wednesday and she is doing very well.

It is really weird being on the outside looking in.

She is doing really well, but I feel so useless.

I need to turn to you caregivers on huff n puff for insight. What should I do? I want to help, but not overstep.
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BrendaJ



Joined: 16 Jun 2011
Posts: 745
Location: Canada

Post Posted: Sun Dec 18, 2016 5:57 pm Reply with quote    Back to top    

So glad to hear that your sister received her lungs!!!

I think you will help her most by just being there for her, ready to show her that she will be ok by your own example. Ready to answer her questions, and you will remember from your time how many questions you will have.

It is a unique club. One no one wants to join until they have to. When I was in the hospital, I met a woman who had her transplant 21 years before. I can't tell you how reassuring it was to me, getting to know her and what she had been through. We have been friends since. I can't tell you what a support she has been, just by being able to be reassured by her, knowing someone has been there before me.
You will be like that for your sister.

_________________
Diagnosed in '08. IPF/UIP , lifetime non-smoker.
Lung Transplant Listed Jan/14
Transplanted Nov/14
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robac



Joined: 08 Jul 2011
Posts: 56
Location: Oakville, Ontario, Canada

Post Posted: Wed May 24, 2017 9:50 am Reply with quote    Back to top    

I am as surprised as many of you. When I went in for my transplant I had the often quoted stat that lung transplants have a 50% 5-year survival rate.

In all my research since then however has conclusively proven that the stat is very wrong. It was coined around the year 2000, which was before the development of 3 of the top immunosuppressant drugs.

However, since I can't do anything easily...I am currently recovering from "septoplasty" a.k.a. a nose job.

As for the path to where I am -

Got a blood clot in year three --> was put on warfarin (blood thinner) --> made it very easy to bleed --> got a really bad bleeding nose --> met a hugely overanxious ER Doc that broke my nose while trying to stop bleed --> nose now finally corrected.

I wonder what the 3rd breathing issue will be (1-IPF, 2-Broken Nose, 3-?)

I hope you are all doing well (or as well as you can be) and know that I send the forums here positive thoughts every chance I get.
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robac



Joined: 08 Jul 2011
Posts: 56
Location: Oakville, Ontario, Canada

Post Posted: Thu Jun 15, 2017 9:02 pm Reply with quote    Back to top    

I am heading in for in for my 5 YEAR assessment!

Holy crap - 5 years. I really never thought I would get this far. But here I am. I know the old stats (50% 5 year survival rate), but I really never thought I'd get this far. Yet, here I am.

I wart to offer my time to anyone that needs a chat, I will make time for you.

Give me a shout and I will find the time.

Rob
416-458-9834.
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BrendaJ



Joined: 16 Jun 2011
Posts: 745
Location: Canada

Post Posted: Fri Jun 16, 2017 5:39 am Reply with quote    Back to top    

Congratulations Robac! I think that things are changing so much that the odds keep improving. I am 2 1/2 years out and still doing well. Have lost a few friends within their first couple of years but not usually from their lungs. Look forward to the next 5 years.

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Diagnosed in '08. IPF/UIP , lifetime non-smoker.
Lung Transplant Listed Jan/14
Transplanted Nov/14
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