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Severe Pulmonary Hypertension


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#61 Darlene_Jack

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Posted 01 October 2014 - 07:35 PM

Thank you for the information. It's very helpful. Take care. I will be checking in often :)
One breath at a time

Darlene jackðŸŒ...

#62 pammartin

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Posted 14 October 2014 - 04:22 AM

Yesterday was supposed to be my latest right heart cath and finally the decision to restart TKI.  Life never seems to cooperate.  A week ago Sunday we received a phone call that changed our lives forever.  My brother in law passed away, 38 years old and full of life.  Although there is an ongoing investigation, preliminary reports state he chose to end his life. 

 

Rest in Peace Scott Martin, you are loved and will be missed.  Right now this is too raw, but thinking of starting a thread in the let's just talk forum. 

 

Right heart cath rescheduled in three weeks.



#63 theotherone

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Posted 29 October 2014 - 05:25 PM

Aloha Pam

 

I just bumped into your postings today and want to first thank you for posting all that you have about your situation(s) and say what a trouper you are!

 

A week ago today I was hospitalized with heart failure after a severe reaction to Sprycel. At the moment Doctors are not too sure what happened. I have been on Sprycel for 2.5 years, Gleevec for the 2.5 years prior. Within 2 hours of taking my normal daily dose I was shivering so bad, abdomen distended, lungs on fire and couldn't get a breath of air.

 

That night in the hospital, being relieved of 10lbs of excessive accumulation of fluids is what probably saved me that moment.. 10lbs of fluids drained in 12 hours thanks to Lasix, diuretic (water pill).

 

Is Pulmonary Hypertension happening to me? who knows but let me leave this in the thoughts of anyone reading this, do NOT sit idly while having some sort of reaction and thinking it will pass.

 

Thanks again for your posts. Ron B



#64 Marnie

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Posted 29 October 2014 - 05:46 PM

That is scary!!  Glad you came out of it o.k.

Best. . .



#65 pammartin

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Posted 05 November 2014 - 08:31 PM

I posted response, showed this afternoon and now has mysteriously vanished. Ghosts at work I guess. Ron, glad you are doing better, take care and keep us posted.

#66 pammartin

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Posted 23 November 2014 - 10:21 PM

Well latest blood work shows my counts and neuts are all low. BCR/ABL test drawn Wednesday,waiting on that result. I still do not have Bositunib approved by pharmacy, hopefully this week. Tomorrow in finally right heart cath that was to be done over Labor Day weekend. Hopefully pressures are lower and the oral medication is working well with the PH. Nothing else to report except waiting on results. I Weill post results on this thread as they become available. Hurry up and wait, the story of CML and Pulmonary Hypertension.

#67 pegetha

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Posted 24 December 2015 - 02:37 PM

Pam, it has been over a year since you last posted on this topic.  Even though I don't belong on the CML forum (my diagnosis is myelofibrosis), I had been following your journey with PH.  How are you doing now, and is your PH problem under control?  Praying for the best for you.

 

Hope you are having a happy and healthy Christmas!

 

Hugs,

Pegetha



#68 pammartin

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Posted 24 December 2015 - 11:15 PM

Hi!

 

I was just to both PH and CML docs a few weeks ago.  My PH continues to be a pain in the rear.  My internal pressures were in the mid 30's this spring, then they rose to 65 over the summer, which caused concern because they were 75 when I was so ill.  They increased the Letairis but then I had awful fluid retention so I was on 120mg of Lasix daily, which was not my greatest time.  In October they went back down to 53 - 55 which was good but not what the doctor wanted to see.  In December they are 56, so they hold steady but Dr Simon would have liked to see them reduce almost to normal with the information out there about Sprycel and PH.  In many cases people return to normal and the PH disappears.  As long as my numbers stay within a fair range and care kept in check with the meds I consider myself one lucky wench. 

 

MY CML test at Cleveland was a bit disappointing.  I waited several days for the results and when they finally came they were inconclusive.  This could have been from the blood being handling incorrectly, timing of the test, or incorrect blood draw and probably many other reasons.  I have to go back in Mid January to be retested.  The only thing I noticed on my regular labs was my platelets usually hang out about 140 and they were 210, my mean platelet was high, but I cannot remember what the number was.  I did spend some days in and out of the ER, I couldn't get my potassium to level out.  My one test says it was .97 but Dr Simon said if that were the case I would have died, so thinking someone forgot to type in a number somewhere, LOL.  My white and red counts are higher than  they have been since 2011 and my Sprycel beginning but still within the normal levels of the tests. 

 

Thanks for asking, I think of coming in and posting but then I argue with myself.  I have been off med since March of 2014 and it is working for me.  I do not want to give the impression I believe others should make the same choice I did, each case is different.  I wonder at times if I have to go back to a TKI how I will handle it.  I have been told by the PH doctor any TKI will affect me in some manner with the PH, we just do not know to what level.  I once jokingly said, 'Ok, you mean I get to pick which one might do me in.'  He smiled at me in a sad way and didn't answer.  I hate it when my jokes fall flat.  :D

 

We have had a foster, 16 year old female since November, she will probably be here till March or April.  So we have my son and her, life is busy/crazy/nuts and for the first time in my life I do not have one present wrapped and I am hours from them waking up for Christmas.  LOL

 

I do have this bottle of Sangria and coconut rum, I am pretty sure I will get through the wrapping. Just not sure how they will look as the bottles empty out.

 

Merry Christmas, have a lovely day!



#69 pammartin

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Posted 26 December 2015 - 02:01 AM

I was up til 5 a.m.  I slept all day today. Feel so bad.  I have never done that before

 

I got the turkey in the roaster but that was the extent of my awakeness. O couldn't even stay away to watch the kids upwrap their stuff.

 

I just can't do what I used too. That pisses me off!!

 

Hope you had a wonderful day



#70 pegetha

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Posted 26 December 2015 - 09:27 AM

You were up until 5 a.m. wrapping gifts, or hitting the sangria and coconut rum bottles?   :lol:  Mmm, sounds yummy.

 

By the way, we never know the good we might do with our postings.  You are the person who has encouraged everyone to take symptoms seriously, and to try to figure out what is going on when there is an obvious problem.  I started following your original post (re PAH) because I was having some shortness of breath.  Since I am also taking a kinase inhibitor (Janus kinase inhibitor rather than TKI), I thought PAH might be a possibility.  After some time had passed, I guess I became complacent and stopped worrying about it.  Then, it seemed that the episodes of breathlessness were becoming more frequent.  When I visited my MPN specialist at MDA last October, I asked him about it.  However, he dismissed my concerns, stating that it had nothing to do with my myelofibrosis.  I took his word as gospel, and began to look for other possible causes.  I'm now seeing a pulmonary doc and trying to find out what's wrong.  I've had a couple of CT scans, breathing tests, etc., etc.  My lungs are scarred, and both lung bases are partially collapsed.  No explanations, though.  Because of your ordeal, I've begun to research the possibility of PAH, and I'm finding out that it actually can be associated with myelofibrosis, and also with the Janus kinase inhibitor I'm taking.  The percentages are low, but this is from a PubMed abstract:  "Patients with myelofibrosis and dyspnea (shortness of breath) should have Doppler echocardiography to evaluate pulmonary artery pressures."  

 

So, thanks to you, I'm continuing to push for an explanation, and more importantly, a treatment.  PAH might not be at the root of my breathing problems, but it's definitely something I'm considering.  

 

And I know exactly what you mean about being pissed off by not being able to do what I once could.  It's so frustrating to start gasping for breath when I try to do something active.  Grrrr!

 

Thanks again, Pam, for your encouragement.



#71 pammartin

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Posted 03 January 2016 - 09:17 AM

Thank you for your kind words.  And I do understand what you mean about the posts, if they help one person they are worth it.  There are so many new things happening with the CML treatments it is very exciting but taking meds is still one of those that I probably push too hard because I do not want others to subscribe to the idea stopping meds is a good choice.  The few that have made this choice are doing so with trials or being closely monitored.  That, perhaps is one of the main reasons I lurk a lot.  If asked then I have to confess.  LOL 

 

Thank you for your encouragement.  I am working enough courage up to get up the stairs.  What once was something I nearly ran up and admittedly tripped more than once now takes effort.  I try to pretend they don't exist most days, LOL






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