dennis-rowe
Forum Replies Created
-
Holly and I were within a week of each other for our transplants at UCSF.
I experienced several exacerbations both at home and in the hospital. Thanks to my pulmonologist’s communication with UCSF, I was transferred to San Francisco to await a double lung transplant. After being there for about a month I was fortunate to receive my transplant. Recovery wasn’t easy. I was on EKMO for a couple of weeks, but all in all, I’m very happy I received a transplant!
Covid protocols have certainly made post transplant harder to deal with, but given the alternative, I certainly would do it all again!
By the way, I really feel that post transplant is harder on your care giver(s) than the transplant recipient!
Choose a chance to live over certain death!!
-
This reply is for all of you(except Christie-thankfully!)
I am 2 1/2 years post bilateral lung transplant, and had several exacerbations before getting my transplant at UCSF. Christie’s mother was there at the same time I was.
As someone who was very fortunate to get the necessary transplant to continue my life. I urge all of you to seek out that solution, if you haven’t already!! I was on Esbriet and it helped me, but a transplant is the only cure!!!
Stay strong!
-
I second what Christi said about UCSF!
I was 72 in 2018 when I was accepted as a transplant candidate at UCSF.
When I went for my initial evaluation meeting with their staff, two of my grown children and my wife were with me. UCSF is very cognizant of your support group, and I really feel having so many family members with me really helped with my candidacy at age 72.In early March 2019 I received my double lung transplant!
Christie is 100% correct!!
-
I got my booster on the 24th…Arm still sore, but fatigue is fading…I’m just happy to get the booster! Wear your masks and stay safe out there!
-
I had three exacerbations after being listed for transplant at UCSF. Two times at home, from where my wife called 911 and I was transported by paramedics to the hospital. Both times even though I was on a lot of oxygen, I still couldn’t get adequate O2 saturation. The third one occurred while I was back in the hospital. My Pulmonologist was in contact with UCSF and I was transported by ambulance from Sacramento to UCSF. Three weeks later there was a match and I underwent a bi-lateral lung transplant!
The exacerbations were really scary, and thankfully I had a great care team that started with my wife and Pulmonologists recognizing how serious I had become!
If you’re fortunate enough to be listed. Don’t be afraid of getting a transplant! It’s the only long term cure for IPF!!
Hang in there!!!
-
As soon as UCSF gives the ok for it’s transplant patients, I’ll be there to get it!
-
I too had tremors after my bi-lateral transplant. They were mostly prevalent in my hands, but sometimes most of my body would shake! The tremors happened quite frequently, and finally got less and less.
I got very frustrated during the lengthy stay I had in the ICU! I had a tracheotomy so the only way I could communicate was when they handed me a pad and pencil. My printing was unreadable, and I got very frustrated when no one could read what I was trying to say! I wasn’t very nice to them, and had no idea why! A lot of hallucinating took place, but it finally resolved itself…
-
Kathleen and Mike,
As previously posted, I had a bi-lateral lung transplant in March of 2019. (72 years old)
Prior to the transplant I had 3 exasperations. The first two at home, from where I was transported to the ER. The third one came while in the hospital. My Pulmonologist contacted UCSF, where I’d already been evaluated for possible transplant. They agreed I was in pretty bad shape, and might not make it through another exasperation. I was then transported to UCSF, and very fortunately received near lungs three weeks after admission.
It has been a long recovery, but thank God for all the doctors, nurses, and my family care givers that got me to now!
To all of you suffering from IPF, or something similar; keep the faith and don’t give up!
My very best to you and your care givers!
Dennis
,
-
Charlene,
I thank you for your reply to my post!
If you care to private message me as you go through your preparations for attaining a transplant, and post transplant recovery, feel free to do so…I will be happy to help any way I can…
Stay strong,
Dennis
-
Hi Charlene,
i just celebrated my 1 year anniversary of my bi-lateral lung transplant!
I’ve been wearing masks in public for many months, since my release from the hospital. Initially I was very conscious of people looking/staring at me. Not so much anymore. I still sometimes mention to them I’m not contagious, and I’m only trying to protect myself.
Little children sometimes look scared when they see me. I always give them a cheerful hello, and tell the older person with them I’m not contagious. In the current time frame the mask is more important than our own self consciousnesses!
Thanks for all you do for us in your column! And remember, the only cure for Pulmonary Fibrosis is a transplant! Hang in there!!
Dennis
-
@mikemoses
Mike,
You asked how old I was when I got my transplant. I was 72 in March of 2019, when I received my surgery, and turned 73 in November of 2019. I’m told some transplant centers are more cognizant/reluctant of your age than others? UCSF did my transplant, and I’m happy to say they were/and still are wonderful!
There was a post a short time ago titled “Am I too old for a transplant?” I commented on that posting, “…consider the alternative, it’s not a good one!”
Mike, my best to you, and work hard post op!
-
Charlene,
I took Esbriet for about a year and a half, before my bi-lateral lung transplant. My Pulmonologist recommended it over Ofev. I had no extensive reactions while on Esbriet, except for occasional diarrhea.
I am now 11 months post op, and still gaining strength. It’s been a long recovery, which was extended because I didn’t work hard enough initially post op. I thank God I had it done, and praise the donor family for their caring donation!
-
I’m 9 months post op from my bi-lateral lung transplant at UCSF. I was 72 years old at the time. I had several major exasperations after being listed by UCSF, and after the third one I was transported to UCSF to await my transplant. I was very fortunate…Three weeks after my admission I received my new lungs! It was a pretty tough recovery, as I needed ECMO, and spent a long time in the ICU. My family was a god send for me and the doctors and nurses as well! My recovery has been prolonged by several factors, but one of the biggest was I didn’t WORK hard enough to gain strength! I think your attitude and how much you want to continue living will overcome your age. I now go to Pulmonary Rehab 3-5 times a week, and am building my endurance, etc. For those of you who wonder if you should undergo a transplant? Consider the alternative! I know I would be dead now if I hadn’t been fortunate and received my new lungs! Be positive about your future, and don’t make the mistake I did! WORK HARD, AND DILIGENTLY after your gift of life!! Also importantly, appreciate your caregivers!!
-
Christie,
We obviously were! My transplant was March 9th 2019!
Dennis