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My name is Sue and I could really use your help. My battle with Pulmonary Arterial Hypertension (“PAH”) has finally reached the point where my lungs are failing and without a double lung transplant, I’ve been given a survival rate of less than 2 years.

Updates (7)

May 3, 2020

Happy anniversary to me… it has been 1 year since my bilateral lung transplant. It’s an amazing feeling to know that I made it. It was a tough go at times, but well worth the end result. Thank you God!!!

This it’s actually going to be an ongoing process with various continuing issues such as increased liver and kidney enzymes and a very low white blood cell count. A change was made to one of my meds and we’re hoping it corrects the issues. If the meds do not work, I could be looking at a kidney, liver or a kidney and liver transplant in the future. Transplant patients often develop osteoporosis and I have the beginning stages of it. As of now, it requires a yearly infusion of Zoledronic acid. It could change to another drug going forward. Bronchoscopies will now be performed only once a year unless they find something interesting or if I’m in organ failure/rejection. Obviously things will come up from time to time, but I’m hoping that we can handle them when they occur.

On another note, while I technically attained my goal of seeing my son graduate from College, I won’t actually see him. Due to Covid 19, the college originally postponed the ceremony, but has since changed it to a virtual ceremony to be held on the original graduation date. While I’m a little disappointed, I’m happy that I am here with my family and we are healthy so far.

Many thanks for the thoughts, prayers and donations. I couldn’t have gotten this far without all of you. May God bless each and every one of you!

February 4, 2020

Hello, it’s been a quite a while since I’ve posted an update. I am now 9 months post-transplant and still doing pretty well. Since my last post, I’ve been told that I have a heart murmur, hearing loss from the chemo shots I received as well as some of my medications and I had a bought of MRSA. My kidney function is under constant scrutiny and now the doctors are watching my liver function as well. Blood draws will be ongoing for the rest of my life as the anti-rejection medications can take a toll on the kidneys and liver. It is also one of the ways we can see if my body is rejecting the lungs as one doesn’t always know. Another way to check is to have a bronchoscopy. This procedure involves a scope with a camera fed down the throat down to the lungs. A piece of the lung is then removed for biopsy. This procedure is done 4 times a year during the 1st year of transplant. If everything looks good, then it becomes a once a year procedure. Regarding the hearing loss, I got fitted for hearing aids in December. They’re just okay, but better than saying “what” all of the time. I have upcoming appointments with a liver specialist, rheumatologist and infectious disease doctor as well as blood draws, chest X-rays and a bone density test … transplant patients often develop osteoporosis.

All in all, I am very happy with the progress I have made to date. Keep the prayers coming. Thank you and God bless you all!

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Guestbook

May 3, 2020

Sue Thayer

February 5, 2020

Sue - So sorry you're dealing with this... Please know that I am sending lots of love and positive thoughts your way! xoxo

Diane Madden

February 5, 2020

Praying for you Sue!

Diana Sullivan

February 4, 2020

Sue, sending prayers for healing and strength as you go through this traumatic time!!

Maureen (Beaty) Greenawalt