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“Breathless” Transplant News
I was diagnosed with IPF in 2019 after living with my hacking cough for 6 months; so best guess is that I am now 4+ years into this miserable disease. First put on OFEV, but after 18 month or so had to give it up because of the GI trauma it caused. Been on Esbreit since May of 2021 with much improved GI.
But, as everyone here knows, the disease is relentless and the slope on my decline has increased. Two weeks ago, the Duke University Hospital Pulmonary Transplant team told me I was ready (i.e. sick enough, but not too sick) and invited me to relocate to Durham NC to prepare for the bi-lateral lung transplant surgery.
And even though I have been working toward this point, their decision it left me “breathless”, and a mental state that I’ll describe as a cauldron of concerns and chaos. I am committed to seeing this through to whatever end the Lord has in store for me. But I keep worrying about things I have no control over, or any way of knowing.
Duke has laid out a sample schedule that starts April 1 with 4-6 weeks of “pre-hab”. Then 2-4 weeks on the OPTN waiting list, then the surgery. Post-op is expected to be 40 days in the hospital followed by 4 or so months of follow up and rehab. SO, if things go as planned, we won’t be able to move home until October-ish. That’s a long haul and has plenty of opportunities to be shorter or longer…depending.
I have my Faith; I have my conviction; I have my meditation; and I have deep trust in the Transplant Team…it’s just so many things could go sideways. This is my current consuming struggle
Any supporting thoughts or ideas from the group will be greatly appreciated! Especially if you have found yourself or someone you know in similar circumstances.
Thanks all!
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20 Replies
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Hi Russell,
I am sending you my love and best wishes and will be with you 100% on your journey through this despite me being thousands of miles away in the UK.
Stay positive my friend!
Keep us up to date when you can.
Kind regards
Jeff. (diagnosed April 2021).
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Dear Russell,
I have the same diagnosis timeline. I have extreme retching problems w Ofev, but don’t do well w pills, so I have not switched to Esp’t.. I will keep you in my prayers. It is a hard trial we have, but we must persevere & trust in Our Lord’s great love and care. Stay strong and brave!
your IPF sister, denise
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Duke is supposed to be very good.
I had a unilateral lung transplant August 31. The process of getting on the list involved a lot of tests, but none were too painful. Just a lot and a nuisance, while (in my case) my health continued to deteriorate. Fortunately I live nearby the hospital — Cedars-Sinai in LA.
Recovery was much better than I had dreamed. As soon as I came to I could breath room air. I was in the hospital for two weeks, and by the time I got home could walk 100 yards or more, and breathe and talk normally. I still coughed (and still do). The cough was painful then, but no longer is. Just annoying. I have walked as many as 8 miles in a day, and ridden my bike over 10 miles regularly. I exercise and take the PT seriously, but was back at work — a desk job and virtually at that — almost immediately after I returned home from the hospital.
Not everyone’s path is so smooth, and there is no guarantee that tomorrow will be as good as today, but I am telling you this because I found the operation itself and the recovery much easier and faster than I imagined or any of the doctors told me. No doubt a bilateral transplant will be more difficult, but even still, in my case at least, there was more life more quickly after the transplant than I imagined.
Keep the faith.
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Thank you for sharing your success story Harold! There are lots of folks out there who have had outcomes with transplant but I feel like they often move on from posting here. A good reminder that a full and healthy life is possible if you choose transplant. 🙂
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Very inspiring, thanks for sharing
Allan Byron
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How wonderful you have been chosen! I can share many of your feelings as I have been interviewed for a transplant. But the shock of it actually happening – I would have felt breathless too! We live in a remote area but my husband knows one man who had a lung transplant several years ago. He is doing well but I don’t know any details.
I have this on my bathroom mirror:
Psalms 143:8
God does not want us to fear. Give this to God. Ask him to direct what lies ahead.
I would love to hear from you in the future. I am putting you on my daily prayer list, Russell. -
I am in a similar situation. 41 days ago, I was walking around, drove 2 hours round trip to take my mother to the doctor. The next day I had an acute exacerbation of my IPF. Prior I had oxygen but did not need it. By the time the ambulance got to my house my 02 sats were 37%. I was taken to the hospital. 28 days later I was transported 8 hours via ambulance to Florida. I have been waiting for a room at the larger hospital… total of 40 days in the hospital awaiting emergency lung transplant assessment. I was told my options were hospice or lung transplant. I said I want the transplant! It can’t get here fast enough as far as I am concerned. Transplant is a major operation and not without consequences, but I will deal with those. I have had enough of this IPF mess for 3.5 years. Ready to reclaim a better quality of life!
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Wish you the best Russel. I was diagnosed late 2018 and started Esbriet in the spring of 2019. My deterioration has not been as fast as others and can still manage day-to-day with a lot of coughing. Especially when I exert myself. I can tell its getting worse but continuing with my treatment and hoping. Good luck and hope it all works out for you.
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Hi Russel; It all sounds so scary for sure but when you read about people who have undergone the surgery and it’s behind them, it is extremely encouraging. I do not know how old you are, but I am 73 and being evaluated for a single lung. However, I manage my symptoms very well right now – and so not sure of next steps. I have no other health issues so given my age, it may be a transplant would not be available for me until I age out of this process. I can see why they put limits, even if you are in excellent condition otherwise. The surgery can be draining and taxing for older people, but I suspect your faith will carry you through as it does for so many of us. Blessings and prayers for all the best, Mary
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Wishing you all the best with the transplant surgery, Russel! Be strong! Be fearless! God bless you and speed your recovery. You will be in many prayers.
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Congratulations Russell! One day at a time. Trust your team and do whatever they have in store for you to prepare for this. Being in the best shape you can be really does make a difference. You have a big crew to support you here if you need it 🙂 Keep us posted on your journey!
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Russell,
Keep the faith and strong positive attitude.
I was on Oxygen for 6 years with a different type of disease at first, hit me out of the blue, life changing.
last 2 years I moved into IPF state, took OFEV right up until my Double Lung Transplant, November 22, 2021.
Best decision I’ve made. 12 weeks out a couple of hiccups but no oxygen after 3 days from surgery and getting stronger everyday.
I was out of the hospital in 11 days.
You need to keep your strength up before transplant. Especially your legs and cardio.
it’s just a new journey, my doctor best described it to me as now I am a healthy complicated patient.
I was on no less then 3 liters 24/7 and higher with exertion.
Duke is good, I live in Ohio so I had my DL at the Cleveland clinic also one of the best transplant centers in the country. I am lucky to only be 45-60 minutes away.
Evaluations can be somewhat tiresome but so necessary for this type of surgery.
Embrace it and you’ll do great. Things will change as you go but it’s worth and better then the alternative
Good Luck and God Bless -
Thank you ALL for your amazing support! It helps SO MUCH to not feel alone in this
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Russell,
Maybe my story will give you some encouragement.
I had a single lung transplant seven years ago after being diagnosed with IPF. I had been on the wait list for six weeks. I was 78 years old at transplant, way over the age limit, but in good health otherwise, except for some cardiac issues (I had a heart attack 6 years before, and had 3 stents). Methodist Hospital in Houston decided to take a chance with me. I spent ten days in the hospital, including three in ICU, after transplant. I am now 85 and have had an almost textbook perfect recovery. However, skin cancers have been a problem due to the anti-rejection drugs; I’ve had 30+ Mohs procedures, but am now working with a Dermatologist who specializes in transplant patients with skin cancers. I’ve needed no O2 since leaving the hospital. My O2 saturation runs around 96-97% and I am living a perfectly normal life. I play some golf, do woodworking and stay active including Pilates twice a week. Life is good. I hardly ever even think of my transplant, other than when I take my 36 pills a day!
I think a good attitude is a critical element in recovery outcomes. It is important to stay positive and aggressive in dealing with the many issues that you will be forced to deal with. Listen to the docs, do exactly what they tell you to do and don’t hesitate to ask any questions you may have. I have a good support system and I hope you do as well. That’s critical.
I know we are all different, and I also know I have been very blessed. But I just want you to know there are many good outcomes. So keep the faith and trust your docs.
I’m well past my “sell by” date. That’s why the first thing I say when I wake up is “Thank you, God, for another day”. Without Him and the transplant team, I wouldn’t have another day.
Peace and good luck.
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Thank you for sharing your success story Wally! Especially as a person who was accepted for transplant at an older age and with cardiac issues. Sometimes I think people read the “age requirement” (a misnomer!) and rule themselves out because of those factors without exploring all of their options or asking for a second opinion. I am going to post more about this week, but I just wanted to say thanks for still being in the forum and sharing your story. It’s very encouraging. 🙂
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Hello,
Thanks for a very inspiring story, I will be 74 soon and try to get a transplant. UCSF declined me, but
I called UCLA for a second opinion. I had an echocardiogram, and PFT, which they requested before making an evaluation.
I hope I will be reconsidered.Allan Byron
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Hello everyone. After reading all the postings today, I want to tell everyone who has had a transplant you are lucky to have such good doctors, nurses and fellow people who care about you and how your doing. To those who are on the list, keep up the faith and know that you’re in God’s hands and things will work out for the good.
I was diagnoised in 2020 and didn’t know I had it, like most of you. But by the time it was discovered, I had already lost 1 lung and the other is being beaten up. I cannot have surgery due to my heart problems. So, all I can do is pray that I will keep on trucking along and hopefully capable to keep doing things.
So, everyone, have a good life and keep your thoughts up.
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Best of luck on your journey. We will have u oun our prayers
Allan Byron
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I was diagnosed with IPF March 2019 and was on Esbriet but made me sick. Tried lowering the dose but just didn’t work. In 2021 went on oxygen 24/7 and in Sept 2021 was admitted with pulmonary embolism in each lung and put on high flow oxygen. I was put on top of the lung transplant list got a new right lung on October 30th. I never really had a chance to decide as it was transplant or not be around much longer. I’m doing well lots of meds and visits and adjustments. But I’m alive and holding my own. I’m really tough and have a bring the heck on attitude which makes me feel good as my family knows I’m a fighter. I would transplant again any time as I owe them that. It would devastate them if I was gone. I’m a get mad not sad kind of guy. I say go for it give it your very best can do attitude
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Mike: can I ask how old you are? I keep wondering when my cohorts post these interesting situations, and since I am awaiting news at 73, I just am so curious how it goes for others. Thank you.
Mary
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