Steve Daggett
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Greetings!
I just had a single lung transplant 3 1/2 weeks ago, and I’ve been off oxygen since the day after the surgery!
I was in the hospital 14 days, partly because I was having some heart arrhythmia that they wanted to monitor. Otherwise I could have gone home earlier.
The difference was dramatic! There are 16 stairs to get into our house. Before surgery I would have to stop 2 or 3 times on the way up, then it would take me 5-10 minutes to recover afterward. I was on 5L of oxygen.
The day I was discharged and came home I was able to walk right up the stairs without stopping, and no recovery time!The trade off is definitely the amount of meds I need to take, but each week my pulmonologist has been reducing the amount. First week in ICU I was on 50mg of Prednisone (yikes!). Next week was 40, then 35…now I’m at 20 and it will probably reduce to 5 or 10 soon, thankfully. Each day I take around 40 pills, but as of today my doc took me off several of them, so the amount is decreasing!
I was accepted for a single lung transplant in April 2018 at UCLA. UCLA’s typical protocol is if you’re 60 or over (I’m 61), they only do single lungs. Studies show that the outcome is virtually the same at that age as a double lung transplant. This way they can help 2 people with one donor. I found out that my donor was a young man under 30…very sobering!
We live in Oregon, so I had to move to SoCal to be closer and ‘on call’ 24/7. Fortunately I have family with a big house that is only 12 miles away! But with LA traffic it usually takes close to an hour to get there!Now that I’m post-op I have to return to UCLA 2 to 3 times per week. That will soon go to 1-2 times, then once, then monthly, etc. I should be able to return to Oregon 3 months post op.
Recovery is going a little slower that I’d like – I still get tired out, but in a different way than before. I’m still a little ‘wobbly’, but that will go away soon. Can’t drive yet, probably in a week or two (can’t wait!)
I’ve had a marvelous experience at UCLA…I mean EVERYONE I’ve had contact with has been phenomenal! I highly recommend them!
Now I have to re-learn how to breathe correctly. I was on oxygen for 3 1/2 years, and struggled breathing for about 8 years before that. I do breathing exercises to increase my lung capacity. I had my first post op pulmonary function test today and it was remarkably higher than before…and it will only get better!
I was on the waitlist for exactly 5 months (to the day). My experience has been great (so far!). It sure is better than before! There were other transplant patients on my ward and a few of them weren’t doing so well – each one is different.
I’m happy to have my life back, with no tubes and cannula!!
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Greetings Charlene!
In response to your post, BOTH cold weather and strong scents have affected me for a long time (sounds cold up there!)
In other news, it’s been 3 weeks ago today that I got the call from UCLA that they had a lung for me! I was out of state at the time, but I was able to catch a last-minute flight that got me there in time! Not only me, but my wife and two adult sons were able to come too! (My wife is my caregiver, and she will be on family medical leave until January 1! We need to stay in Los Angeles until then (so many follow up tests and appointments!)
The surgery was successful, and I’ve had very few complications. I was in the hospital for 2 weeks, and ‘home’ for a week. The coolest thing is that day 2 post op they took me off oxygen, and I’ve been on ‘room air’ ever since! My O2 saturations are in the high 90s. I can actually take deep breaths without coughing, although it will be several months (including pulmonary rehab) until I re-learn how to breathe! I had, out of necessity, forced myself to breathe shallow to avoid coughing for nearly 10 years. So I have to re-train my muscle memory. Because I’m over 60 (61) they qualified me to receive one lung (left). It was in worse shape than the right. I still have IPF on the right, but the new lung will take over most of the breathing for me.
I found out my donor was a young man under 30. Very sobering. After 6 months the donor’s family can reach out to me if they like. I’m totally cool with that!
I’ve been staying with my cousin in LA since April, and will stay here until after Christmas. His house has a full set of stairs (16) up to the front door. Before surgery, I would have to stop 2 or 3 times to catch my breath (even with 5L oxygen) and it would take me 5-10 minutes to recover after that.
Now I can climb the stairs without stopping or slowing, and I’m only briefly short of breath (like a minute), then I’m good to go! That will even improve as I continue to recover and exercise more.
The ONLY tradeoff for me is now having to be on a stupid amount of pills each day. But even since my discharge from the hospital, the amount has decreased, and will continue to decrease as time progresses. However, I will NEVER be able to discontinue the immunosuppressants. But at least I can breathe again!Anyway, just wanted to share the good news!
Stay warm!
Steve 🙂
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Hi Janet!
I just saw your post from 3 weeks ago. Hopefully you are doing better??
I, myself, just got out of a 5-day hospital stay for heart arrhythmia issues, which is a common ‘tandem’ condition with PF/IPF. My heart rate was bouncing all over, from as low as 30BPM up to 150+. I have had this issue for a few years now, and have had a cardiac ablation to try and fix it. Unfortunately, it came back. I used to have Atrial Flutter, and now I have paroxysmal Atrial Fibrillation (paroxysmal means intermittent). So they introduced a new (to me) medication, an antiarrhythmic. The bummer is, one of the side effects worsens my lung condition! So, I can somewhat relate – having to deal with meds that help one condition but hurt another.
I am on the transplant waitlist at UCLA, and, fortunately, this episode/condition doesn’t jeopardize my listing!
I hope your situation resolves soon!
Blessings,
Steve
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I’m sorry you’re having to navigate difficult situations with this. I’m not sure if you’re at a place in your relationship where you can ‘debrief’ the instance. In other words, are you able to sit down with her and say, “Can we talk about what happened the other day?” Sometimes removing the emotions and looking at it objectively can help. Saying things like, “I value our friendship, so I want to explore…..(insert your take on the incident)”
Just offering a suggestion that has helped me in the past!Hope you have a great weekend!
Steve
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Greetings again, Charlene!
If relationships didn’t have ‘hiccups’ once in a while, I would question the depth of the friendship! As friends -including spouses and significant others – get closer, the walls we’ve built to protect our innermost core can start to come down, and it’s often scary and painful. As a very wise man once said, “iron sharpens iron”. In other words, as relationships grow sparks are gonna fly…but the end result is a finely honed, beautiful instrument. I think the silver lining here is that your relationship(s) can actually get stronger as the wounds heal.
I don’t mean to go all ‘therapist’ on you (because I’m not one!), but my experience is that if you can work through the hurt (both of you) with the goal of keeping a good friendship, your relationship will get stronger!
I’d rather have a friend who is honest with me than a ‘friend’ who is superficial! -
I, too, have had several friends and family members talk about their life situations and then end the conversation with, “but who am I to complain…YOU’RE the one with the terminal disease!”
I am not a complainer, nor do I infuse conversation with my disease (unless directly asked), but people create their own barriers…possibly as a way to diffuse a difficult subject – to assuage their discomfort talking about it. -
Strong odors have been the bane of my existence for several years. While I don’t frequent hair salons (I’ve been shaving my head for several years), I do often accompany my wife at nail salons. I usually have to sit next to the door (if it’s open) or wait outside if there are several people getting nail polish applied/removed. Otherwise the odor triggers a coughing spell. I’ve had to use my mask a few times, especially when I’m getting my 4 acrylic nails filled and shaped (I play guitar!).
Perfumes and colognes can trigger my coughing, as well as household cleaners. I try to avoid the detergent/soap aisle in grocery stores. I can’t enter certain stores that have lots of scented candles, imported wicker baskets, etc. on display due to the strong odors.
Since odors are actually made up of the same molecules of the chemical(s) being used, those molecules do make it into your lungs. Can’t be healthy, especially with diseased lungs! Since our lungs are exposed to everything in the air we breathe in, those of us with depleted/damaged breathing organs need to be extra cautious.
I attend a monthly pre/post lung transplant support group at UCLA (I’m pre). Once I have the transplant, I’ll be even more restricted with what I can be exposed to. Not saying I won’t be better off (I will be!), but I’ll have to be extra careful.
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Hi Charlene!
You must be either in Britain or Australia? (Celsius VS. Fahrenheit) But I know that’s hot!
Regarding puffers/inhalers, before my diagnosis my doc thought I might have asthma. We tried several types of puffers, but to no avail. Probably tried 6 over 2 years. Nothing helped.
In the morning I just ride it out. The cough medication tends to make you drowsy, which wouldn’t work well when I’m trying to wake up!
Hope that helps! Please don’t hesitate to inquire about anything!
Steve
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Once I was awakened (still half asleep) thinking I was at the beach on a windy day. Turns out my cannula was blowing in my ear!
My pulmonologist prescribed Tessalon Perles as needed for coughing, and it seems to help. I don’t take it every day.
https://en.wikipedia.org/wiki/BenzonatateI typically fall asleep propped up by 2 pillows, but once I fall asleep I’m out. My wife says I could sleep even if a bomb went off! When I wake and my heart rate naturally increases, I’ll have a doozy of a coughing spell (my wife says it sounds like my lungs are coming out), but after that passes, I recover and continue getting up.
I will also have a similar cough attack when I first get into bed. I’ve started sitting up first, allowing myself to ‘cough it out’, then when it stops I’ll gently lay down – like I’m tricking my body into lying down. That helps me! -
I rarely am able to lay flat. I typically sleep with at least 2 pillows, sometimes 3. It’s too uncomfortable to lie flat on my back. I either have to elevate my head/upper body and/or lay on my side.
When I first lay down I typically have a few coughing episodes, then it calms down. I’ve resorted to having to take an OTC sleep aid (like ZZZQuil) to help get to sleep. Once I’m asleep, I’m usually OK for 6-7 hours.
Sometimes I wake up with my cannula/tubing wrapped around my body once or twice, or the nasal part slips off and blows into my eye 🙂
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No problem at all!
I was diagnosed in February 2015 – but quite by accident. I’ll explain later.
About 10-12 years ago I started developing a persistent dry cough. After about a year I finally went to my PCP to check it out. He thought it was probably some type of asthma, so we tried an inhaler. Didn’t work. After 4-5 months we tried another (different medication). Didn’t work. Long story, short…we tried different methods over the course of about 7 or 8 years…and the cough became increasingly more troublesome.
Fast forward to 2014. My wife and I were at the end of our 5th trip to Uganda (working with orphans) and I became very ill on the last night (super high fever). We thought it might be that I contracted malaria (very common) and we had with us the ‘malaria cure’ – a 2-day course of strong antibiotics. After the 36-hour travel home (during which I was very miserable!), I still felt bad and headed straight to my PCP. As the nurse was taking my vitals, my heart rate was over 170 bpm and wouldn’t go down.
So my doc sent me straight across the street to the hospital where they put me in ICU for 3 days. My heart rate still wouldn’t go down, even with the meds they were trying, so they decided to try and ‘kick-start’ my heart by stopping it (with drugs) for a couple moments (felt really weird!), then restarted with another drug. It didn’t work! On the 3rd day, my heart self-converted back to a normal sinus rhythm on its own and they discharged me. While I was there they did several EKGs as well as a chest x-ray, looking at my heart. A few days later my doc calls me and tells me that my chest x-ray revealed that my lungs were very ‘cloudy’, so they wanted me back to do a hi-res CT scan. A couple days later, the radiologist and local pulmonologist confirmed that I had IPF.
The one ‘pulmonologist’ in our little town is a general practitioner that specializes in lung disorders and sleep studies. Fortunately, my wife works for the hospital (grant writer) and I was able to be referred to a very good pulmonologist that had studied under one of the nation’s top lung specialists up in Seattle at UofW. He’s amazing! At first he tried to refer me to the program at UofW, but they have very stringent requirements for acceptance into their program. At the time, I was a bit overweight and they absolutely don’t accept anyone with a BMI higher than 30. So he said we could either try Stanford or UCLA. I don’t have any contacts in the Bay Area, but I have family in Southern California that I was welcome to stay with, so we chose UCLA. They are a little more ‘forgiving’ when in comes to the weight issue, but still wanted me to lose (which I did!).
In March of 2017 I went to UCLA to begin the lung transplant evaluation (many appointments tests and procedures over the course of 2 weeks). My test results at that time weren’t quite low enough to put me on the list yet. So they decided to wait and have me come back every 2-3 months for follow-up tests. Over the course of that year, my results were steadily declining. Slowly at first, but more rapidly since this past November. At my appointment 2 ½ months ago, my UCLA pulmonologist said, “It’s time!”. So I came back down in April to re-do the transplant evaluation process. I met with the surgeon, psychologist, social worker, cardiologist (had a heart cath procedure), etc. A couple weeks after my tests they presented my case to the larger transplant committee, and I was accepted into the program for one lung (due to my age – 61). Their protocol is anyone between 60-70 receives a single lung unless there are very special circumstances that would warrant a double.
So, now I’m here in LA awaiting ‘the call.’The beach is also my happy place. I was born and raised in a small beach town here in SoCal, so I go every time I’m down here! Even living in Oregon, the coast is only 90 minutes away from where we live, and we go there often!
Please feel free to ask any questions! I don’t mind at all!
Blessings on your life journey!
Steve ( 0 )====:::
(that’s supposed to be a guitar!)
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Thank you!
No problem with sharing that my FEVs have been in the low 40s. They’ve been under 50 since November. I do try to get out and about often, but if there are stairs and/or inclines (even minor ones) I have to take them very slowly – and then it takes about 4-5 minutes to “catch up”: coughing, then waiting for my O2 saturation to get back to mid 90s before I can move on. It typically drops to low 80s with minimal exertion.
I, too, ended up in the hospital for 4 days last month due to a respiratory virus I caught from a close friend. They had to temporarily suspend me from the wait list for 3 weeks until the virus was completely out of my system. Frustrating for sure! But I’ve been back on the list as of May 31. Since I am now 61, UCLA’s protocol is that people between 60-70 typically will only receive a single lung. The research tends to show that the longevity post-surgery is virtually the same for this age group whether you receive a double or single lung transplant…and if they can help 2 people with one donor, that’s their prerogative.
My left lung is much worse than my right. I had a radioactive contrast procedure done in April that showed my left lung was only getting about 25% blood/oxygen flow compared to my right which was getting 75%.
So, just passing the time waiting. Fortunately, I still have a part-time job that I can do completely online (web stuff), so that gives me something to do!#alwaysandadventure
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Yeah, a/c has been a cough trigger for a long time! Smoke of any type is avoided at all costs. Even the slightest physical activity has become a cough trigger (walking short distances or up a flight of stairs)
I had the option of Seattle (University of Washington) or UCLA in Los Angeles. I have a better living/accommodation in the LA area, and I grew up down here, so I’m familiar with the territory! Plus, UCLA is one of the top centers in the US!Are you a transplant candidate?
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Appreciate your posts, Charlene!
Even before I was diagnosed (3 years ago), strong scents (perfume/cologne, smoke/vapor of any kind) always trigger a coughing fit for me. Also, when air conditioning (car, house, etc.) kicks in, coughing ensues. I have to avoid the cold food/freezer sections in grocery stores because the cold air triggers coughing. Food odors while cooking (I am a foodie and love to cook) are troublesome as well. I’ve had to get used to taking barely hot showers due to the steam from hot water…and I do keep my O2 on while showering.
These are just a few of the challenges of living with IPF. I’m now (finally) on the transplant waiting list at UCLA! Even though I live in Oregon, I am now living with family in the Los Angeles area since I need to be within 2 hours of the hospital at all times.
Our family motto is, “…always an adventure!”