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We've GOT to find a cure!!

Thursday, September 13, 2007
I'm well aware of the seriousness of this disease, pulmonary hypertension. I'm well aware of the symptoms, treatments, side effects, etc. I'm also well aware of the survival rate of 2-5 years after diagnosis. But all of that just seems like information for someone else to worry about. I try not to focus too much on the details. I try to just live life....take it as it comes and thoroughly enjoy it! But, once in awhile something come along and reality comes right up and smacks you in the face.
I had been thinking about a new member of our local PH (pulmonary hypertension) support group. In fact, our support group leader had just asked me a couple of days ago if I had heard from Eileen. I realized today that I hadn't talked to her since the beginning of the summer. She lived in Iowa and we would chat on the phone from time to time and send each other e-mails. The last time I had spoken to her, was the end of June. She had just been turned down for transplant at one of the transplant centers but was heading up to the Mayo Clinic for evaluation for transplant. She was very positive and was looking forward to the summer with her wonderful husband and three teenagers.
I found out today that she passed away on July 22nd, the day after her daughter's 17th birthday. When she and her husband arrived at the Mayo Clinic on July 19th. She was having lots of problems with fluid retention. A procedure to remove some of the fluid from around her heart started a cascade of problems that she was not able to recover from.
Some of you may be aware of the fundraiser we are working on for pulmonary hypertension. It is going to be on the evening of November 17th. We are trying to raise awareness of PH and to raise money for research for a cure. We had our first fundraiser last year and were pretty successful. If you are not on the mailing list (you would know because you received a "Save the Date" magnet in the mail about a month ago) and would like to attend, please send me an e-mail (annettemarkin@hotmail.com). We have to find a cure! I would like to share part of a "Caring Bridge" journal entry that Eileen wrote on July 2, 2007:
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My health seems to be taking a downward turn and I thought this site would be a great place to keep those of you who want to know in the know... I had been having problems with increased shortness of breath and low oxygen levels. Tests done at Mayo's indicated that my condition was worsening and my doctor suggested that I meet with the lung transplant team. I spent the following week being poked, prodded, scanned etc. Jim and I met with a Pulmonologist, Infectious Disease specialist, Psychiatrist (she thought I was an optimistic, humorous and resilient person - they are so easy to fool), transplant surgeon and the head of the transplant pulmonology department. We got a thumbs up from the first several people we met, but the last two doctors were not as positive. In fact, the last pulmonologist told me I was not a transplant candidate. HOWEVER, the team meets as a group on Mondays and everyone presents, argues etc. and then they vote...Get the rosary beads out.....

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Thank you all for reading. Please pray for Eileen's husband and children as they continue to work through their grief. Please, please continue to pray for a cure.

Annette

6 comments to We've GOT to find a cure!!:

Colleen said...

Oh Annette, I am so sorry to hear of Eileen's passing. It makes me sad when I hear of a PHer passing on, even if I have never met them. It makes the reality of the disease so much more up front and center. My prayers go out to Eileen's family and friends. May they have strength to get through this tough time.
~Colleen

Annette Markin said...

I think I might post your poem, "When a Phriend Becomes and Angel," Would that be ok with you?

Jacqniel said...

Prayers for Eileen's family - and for finding a cure. Hugs, Jacque

paula54 said...

Hi Annette.
So sorry to hear about Eileen. Had she ever been to support group? I don't think I remember her. Take care. Paula

Annette Markin said...

Hello Paula. Yes, she only came once. Barb and I were trying to remember if it was the April one or the May one.

Di said...

Dearest Annette,
I was so sorry to read about Eileen in your latest blog entry. I am sure it did hit you between the eyes when you heard the sad news. I will pray for Eileen's family and YOU and your family as you deal with PH. I just know the cure is around the corner, within reach!!! love ya, di