May 3, 2024
It has been exactly 5 years since I had my double lung transplant at Northwestern Hospital
in Chicago. It has also been an emotional roller coaster with all of the ups and downs / and
twists and turns.
Since my last update, I finally had my surgery to remove the large tumor/polyp in my
duodenum (lower intestine). Since I was not considered strong enough for the Whipple
Procedure (a very invasive surgery), the doctors were thankfully able to remove it
endoscopically. The surgery took much longer than they thought and I had to spend 2
nights at the hospital because I was vomiting blood and bile. When I finally got home, I
didn’t feel right. I believe that I had a reaction to the stent that they put in my bile duct. I
didn’t feel better until they removed the stent 2 months later.
I still struggle with chronic kidney disease (CKD) which strips you of your energy … tired
all of the time. I often get dehydrated, which doesn’t help at all.
I am now dealing with hypertrophic cardiomyopathy (HCM) which affects the left ventricle,
the main pumping chamber of the heart. The walls of the left ventricle become thick and
stiff. I once again have shortness of breath and significant leg swelling. I also have issues
with AFIB. This might all be caused by Scleroderma, the auto immune disease that I have.
I have gone through quite a bit in the last 5 years. I’ve changed as a person … some good
and some not so good. I thank God every morning for giving me another day to spend
with the people I love.
I thank all of you for your donations, thoughts, prayers, cards and kind words. I hope to see
you all next year!!!
God Bless, Sue
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!
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!
August 31, 2019
Hi there, first of all I want to thank everyone that sent prayers, donations or cards. It means a lot to me and my family. It’s been a heck of a ride so far. After several long hospital stays and 1 rejection episode, I’ve made it to the 4 month post-transplant mark. I was on the transplant list for just under 2 months when I got the call that they had lungs for me on 5/1/19. Surgery started on 5/2/19 in the afternoon and concluded on 5/3/19 around 2:45 am. After the transplant, the thoracic surgeon told my family that my lungs were “rock hard” and that I had less than a year to live had I not gotten the transplant. I believe that it was Divine Intervention.
While I’ve had many setbacks including an AFIB episode, 2 blood transfusions, lung draining via needle and chest tubes as well as many other procedures, I am moving along … slowly by surely. It’s going to be a full-year recovery. The pictures were taken right after surgery. More to come later …
May 13, 2019
This is Sue's son with another update.
So far the feeding tube has been replaced twice due to clogging issues and she is currently experiencing back pain not related to the actual surgery. Fortunately she is out of the ICU and can walk a lap around the floor. There was talk that she could be home as early as this week, but the doctors want her lungs in the best possible shape before releasing her.
Thanks again for all of your support.
May 7, 2019
This is Sue's Sister-in law Kim. Yesterday Sue had a new J-TUBE put in. Today she is having a little setback. She has A-fib ( heart out of rhythm) Doctors decided to give her medicine first....in hope that with work. She also had been given more blood...nurmber down just a little bit. She is very tired today. Her being tired and set backs are all understandable due to what she is going through.
Sue and the family would like to thank all those who have her in prayer and have donated. We can't thank you enough for all your ❤️❤️❤️ Blessings back to each and everyone of you.
May 7, 2019
The transplant took place late last week. So far everything is going well and hopefully the hospital stay will be as short as possible. As of earlier today, the feeding tube might need to be replaced, but everything else looks great. Thank you to everyone for your support.
April 3, 2019
My feeding tube was inserted about two weeks ago. While it's not being used yet, the site will be healed and ready to go come transplant time.
