Pulmonary Hypertension in Colorado--Nancy, Christina, PamO, Anyone?

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PJmomrunner

PJmomrunner

Well-known member
Joined
Apr 10, 2005
Messages
1,726
Location
SW Michigan
This is a plea for help for my good friend's son's girlfriend (who may be "the one"). Allie walked into the hospital in Colorado Springs four weeks ago with a cold that wouldn't quit and was released today with a diagnosis of severe pulmonary hypertension. Her right heart is very enlarged and both right valves are "shot". She is being told she needs heart and lung transplants.

If anyone ever needed a second opinion from "THE guy" to get a second opinion from, it's this girl! Can anyone help?
 
http://www.phassociation.org/Message_Boards/main.asp?board=1

http://www.phassociation.org/Find_A_Doctor/


Here are two more links. She DEFINITELY needs to set up an appt. with a specialist. Many people with severe PH, including my husband, have benefitted from the newest treatments which are either oral medications, central line or infusion pump. Tracleer (oral medication) reversed his severe PH. He uses no oxygen, and his tests show only mild PH. It did take a while to get back into the mild phase, but the new treatmewnts can help many avoid transplants.

Of course, there are those who will need a transplant still, but a specialist needs to be consulted.

I am hoping that medical treatments will work for her.
 
P.j.

P.j.

I have not been officially diagnosed with pulmonary hypertension - I just was/am scared that I have it after reading things on the internet. The docs have told me I do not have it (over and over) and recent second opinon readings of my November 1 echo tape say that I do NOT have right heart enlargement.

Anyway, I know women are more prone to PH and when young women get it, it is usually primary pulmonary hypertension and is pretty severe and serious. It is also VERY rare.

Secondary pulmonary hypertension obtained at an older age is manageable and is usually not as serious.

There are so many new medications (from what I have read) but it is quite a horrific disease to have - especially as a young woman and to have primary pulmonary hypertension.

My prayers are with this young gal. Life just is not fair. I don't understand it at all - all I know is from what the Bible says - if we can endure and trust God these horrible physical ailments and trials on this earth, when we cross over into eternity, it will seem like nothing, our earthly trials. However, right now while we are going through them, it is hard (major understatement).

Christina L
 
Oh, Christina, you have been through so much. I have been following your progress and did know that you have been told you do not have PH (thankfully--and BTW, I'm with Karlynn, so mommy uses a little oxygen at night...she probably wakes fully rested!). I just thought that you might be a source for who "the guy" might be in Colorado.
 
Oh, well, I don't know "the"

Oh, well, I don't know "the"

guy in Colorado, but I would point this young lady to the University of Colorado Health Science Center - they supposedly have a fabulous PH department. Also, Rose Hospital is another wonderful hospital for respiratory ailments.

Christina L
 
I was thinking in bed

I was thinking in bed

this morning and realized I thought I had put Rose Hospital as a reference for someone with pulmonary hypertension. They may be good also, but I meant to say National Jewish in Denver - THEY are the ones who deal with respiratory illnesses.

Hope this helps. However, I am pretty sure that UOC Health Sciences Center is the place to start.

Christina L
 
I'll echo Christina's recommendations on "THE" people in Colorado to talk to about this. We have a friend that's just been diagnosed and he's working with a group of doctors University of Colorado. Nat'l Jewish is supposed to be very good also. Check out both of their websites.
 
For a young women, Jewish Hosp. is the way to go. And she needs to run, not walk; she needs help immediately.
 
Well, it turns out Allie was not actually released from the hospital as scheduled...she went into heart failure before they could release her and they've been "putting out brush fires" since. (I don't know what these "brushfires" consisted of, but one problem after another, apparently.)

So, the doctors in Colorado Springs are transferring her to the U of CO in Denver where she'll get a second opinion. In the meantime, she is on the list for both heart and lung transplants and there at 198 people in front of her. Her place in line could change fairly rapidly if she has the right blood and tissue types, I am told.

I don't know this young woman, but she's 34, has no family, and is by all accounts a lovely person. She can use all the prayers, good thoughts, well wishes we can spare.
 
She Certainly has my prayers PJ...

She Certainly has my prayers PJ...

As one who has multiple health issues, (including Pulmonary Hypertension) I can certainly understand how scared she is....She will be in my thoughts and prayers....Harrybaby:eek: :eek: :eek: :eek: :eek:
 
Allie passed away this morning.

Info is sketchy, but she had both right-side valves replaced or repaired and was to go home today (in-patient since 12/19). She had a massive heart attack as a result of a post-surgical blood clot.

My friend is flying out on Saturday to be with her son, who is, of course, devastated.

So sad.
 
PJ, I am so sorry to hear this news. You friend and her family will be in my prayers for strength and comfort from God to get through this very hard time in their lives.
 
P.J. You and Allie and her family have my prayers

P.J. You and Allie and her family have my prayers

I am so sorry to hear of this P.J. You all have my deepest sympathy and prayers. Harrybaby:( :( :(
 
Oh PJ I was so sad to hear the news, I wasso hoping one of the PH guys woud be able to help her.It's awaful when people die so suddenly,please let your friend know all that love Allie are in my prayers, Lyn
 
How terribly tragic. PH is a very difficult disease and requires the care of specialists. I am so sad for her family.
 
I will pass on all your condolences to my friend so that she can share them with her son and Allie's godparents and friends. I hope it will comfort them to know that there has been a group of empathetic people praying and hoping for her all along and that we are continuing to do so for her and for those who love her.

Thanks everyone.
 
Please add my condolences to those of the others.

I keep trying to write something else that would be of help to them, but am not getting too far....my heart goes out to them all.
 
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