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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 (8)

November 27, 2020

HAPPY THANKSGIVING TO ALL!

I am very happy to say that it has been 18-1/2 months since my double lung transplant. It took place at Northwestern Hospital in Chicago, which is now the leading hospital in the world doing double lung transplants on critical Covid-19 patients. They really are miracle workers!

Since my last update, I have been diagnosed with Stage 3 Chronic Kidney Disease. I can stay at this stage for a number of years or my numbers can drop and I will need to be put on the list for a kidney transplant. I was told that the operation was “easy peasy” compared to what I’ve already been through. Only time will tell.

My Scleroderma has been somewhat stable. However, I also have Raynaud’s disease as a result of the Scleroderma. It is a rare disorder of the blood vessels in my fingers in which blood can’t get to the surface of the skin and the fingers turn white and blue. The skin is also very dry and will crack as well as develop ulcerations on the finger tips which can take up to a year to heal. I often sleep with gloves on.

Transplant patients often develop osteoporosis. I am supposed to get a Reclast (Zoledronic) infusion to treat osteoporosis once a year. Unfortunately I cannot get it this year as I broke a molar in March, 2020 (the beginning of the 1st Covid shut-down) and couldn’t get it pulled until October, 2020. I now have to wait until the site is completely healed because the infusion can wreak havoc on the jaw bone and cause extremely slow healing after dental work.

All in all, I am very happy to have celebrated another Thanksgiving Day with my family. Everyone stay safe and God Bless!

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!

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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