You Can Help Make a Difference
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 (9)
May 1, 2022
Hi there, it is now May 2nd, 2022 and it’s my 3 year double lung transplant anniversary! I can’t believe how quickly time has passed.
Since my last update, my kidney disease is slowly getting worse. I still haven’t gotten a Reclast (Zoledronic) infusion to treat my osteoporosis because it wreaks havoc on your kidneys.
The anti-rejection meds have caused some issues. My stomach lining and entire colon are inflamed. Not sure what we are going to do about it at this point. I have developed a hiatal hernia that is causing me some discomfort as well as shortness of breath. I hope to have it removed before the end of the year.
The most disappointing information I received is that I have a large mass in my duodenum (beginning of the small intestine) that is pre-cancerous, but needs to be removed sooner rather than later. The doctors are going to try to remove it endoscopically, but will have a team of surgeons on call in case it is too large and has to be surgically removed.
And saving the best for last, my family all caught Covid. I am the only one that is still testing positive since March 16, 2022. I had to cancel my surgery and several other appointments because of this. The doctors had me immediately get antibodies that help slow the progression of the virus and make me feel better. I was finally getting up and around and very thankful that I was able to convalesce at home. That was until the week of Easter. I became very sick and had to go to Northwestern’s ER. I could hardly move. I was severely dehydrated and wasn’t eating. I thought I was going to cough up a lung. I was pumped up with IV liquids, Heparin, white blood cells, etc. The doctors were looking for large blood clots in the lungs, but luckily didn’t find any. I’m still dragging and have very little energy, but I’m working on getting stronger. I feel like I’m starting all over from the original transplant surgery.
Things have not been easy, but as I said over and over to myself while in the hospital “God only gives you what you can handle”. That has become my mantra.
Everyone take care and get out there and enjoy life while you can. Thanks again for all of the prayers, donations and support you have given me throughout this journey of mine. Love to all …
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!
Photo Galleries (2)
Guestbook
May 4, 2022
Hello Sue (and family),
Keep pushing forward. Love to see your updates and progress. What a fighter!
John Kerr
May 2, 2022
Praying for you Sue! Keep fighting the good fight! Sending you a big hug too!
Diana Sullivan
May 1, 2022
Continued prayers and well wishes Sue! You are so brave and strong!! God bless you!!
Kristen Hass
