David Ota
Forum Replies Created
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@christie-patient
I am shocked and surprised the FDA and CDC has our backs 🙂
Who’d-a-thought. I’ve been watching the news on the topic for the last month or so and was getting antsy for a decision.
I scheduled a CVS Pharmacy Pfizer 3rd dose on their website for this morning (Monday 8/16/2021) but my wife talked to one of her transplant caregiver friends and she said Walgreens had a walk-in policy for the immunosuppressed.
Call my local Walgreens at 4PM yesterday (Sunday). They confirmed the 3rd shot was a walk-in, no appt necessary and they had the pfizer shot, 30 minutes later I had my 3rd shot.
Sore arm, same as 1st and 2nd.
Pharmacist said I was 3rd person that day who walked in for a 3rd shot. I figured the transplant crowd would be kicking their doors down.
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Jill
To answer your question: “Is your quality of life better with the transplant than on the meds?”
Answer: “Yes, My quality of life before and after the transplant is exponentially better”
That was a simple answer to a straightforward question. Like most things with IPF and a Lung Transplants answers are neither simple or straight forward. I read your post last night and thought, I am uniquely positioned to weigh in on this topic.
A quick bio is in order, Diagnosed with IPF in 2011, Lung Transplant at St Joes in 2016, Chronic Rejection diagnosed 2020. I was on ofev for years with the stomach side effects. I was also on Esbriet before the transplant, and was actually taking Ofev and Esbriet as part of the ofev drug trial I was on. I will be 62 this year, so your guy and I probably remember the 70s and 80s better than we remember the last 5 years 🙂
When my wife and I were confronted with the end of our IPF journey and started looking at Lung Transplant Centers, Quality of Life was one criteria we considered. Several others were Transplant Survival rates, the trade of IPF for Transplant issues, how far we lived from Phoenix, my job, her job.
When I was finished with the transplant evaluation in 2016, I was shocked that the docs wanted to list me right then and there. I thought I was “too healthy” to get listed. I sometimes still think that. My plan at the time was to wait as long as I could before getting a transplant, and live with the awful things IPF was doing. I figured, someone might cure IPF, they might increase the transplant survival rates, I might stop declining. Ofev and Esbriet buys time, and that’s what I needed in 2011. Ofev got me to 2016, without it, who knows.
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Disability Milestones. The indignities keep coming. I must say the concept of a Disability Milestones is a new concept. I have used “Milestone” in my previous life as, 1st Job, 1st Car, 1st Marriage (and last hopefully), Kids, Home ownership… Signs that I was expanding my life, my independence and freedom.
O2 tank, Handicap Placard, Wheelchairs, Work from Home, FMLA… These markers are opposite of what I thought of as Milestones, and yet they are like the Brady Bunch to Boomers, common touchstones to the IPF crew.
I think this forum is helpful, and local support groups are helpful. Knowing you’re not in this alone, sharing your hard fought wisdom, asking questions of real people who are farther along this journey. I am grateful for the IPF and Lung Transplant patients that took the time to answer my questions. 10 years ago, when I was 1st diagnosed with IPF, I don’t think this forum existed. I certainly felt my wife and I were in the fight alone.
I think Karen is correct, time helps you accept this new you.
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Hi Don
As I said in my last post, I’ve known and followed 7 other transplantees in some detail. The recovery from the surgery can vary wildly between individuals. There was a similar question in one of Charlene’s Posts. I remember saying the decision to move forward with a transplant, for me, came down to one simple question, “Am I ready to leave this world?” My answer was, “No”. Getting a chronic rejection diagnosis last year is forcing me to review that question again. I already know my answer, my wife and I will roll the dice again. In the last 5 years I have watched my son and daughter graduate college and become adults. I wake up with the most beautiful woman in the world every morning. I do not know what the next 5 years have in store for me, no promises, no guarantees, but my life is so good I have to try.
Getting down from my soapbox for a minute, if the transplant Docs had said, “Dave, we’re gonna tear your lungs out, give you the gnarliest scar we can, inflict the strangest side effects, stomach aches, and skin cancer on you” I may have hesitated, but they didn’t because they don’t know. My uneducated observation of recovery is, the healthier you go into the surgery, the better you recovery after. The fewer “comorbidities” you go in with, the easier the recovery. The younger the patient, the better the recovery. The better the attitude, the better the rehab.
I was diagnosed with IPF in 2011, you remember, there was no treatment, no Ofev or Pirfenidone. I was able to join one of the drug studies in 2012. I did not know if I would get the real drug or a placebo, but it allowed me to do SOMETHING to claw back some control of my life.
Quality of Life is important to me also. Given a chance, I will go for another transplant, knowing how hard my 1st one was, and watching people die during their 1st year of recovery.
Man, some of my posts are really dark these days 🙁
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@christie-patient
Not that you asked, but here’s a view from the other side of the fence. I am the ailing parent with adult children who have no kids. IPF-2011, Lung Transplant-2016, Chronic Rejection-2020.
1. Being a parent is the hardest job I have ever had, bar none. I did not think I was ready when I had my 1st when I was 31, and my son is getting ready to turn 30, and I’m still not ready to be a parent 🙂
2. I personally would not wish parenthood on anyone not fully committed. There were days I was so tired I could not see straight. Days I was so frustrated, I could scream. Years money was so tight, vacations went on credit cards.
3. For me, the pressure and responsibility were always there, a constant background hum. Gotta feed ’em, gotta change ’em, new shoes, boy friends, girl friends, cell phones, bullying, grades, college.
If one of my kids came up and said they felt guilty they did not have any grand babies for me, I smack them upside the head, again, I question if I ready to be a parent…
My IPF and my Transplant are my problems. I’d be lying if I said I don’t hear the Grim Reaper sneaking up on me. I also know the time and effort I used to be a parent. I would beg both my kids to NEVER use me as an excuse to have a child. My take: Have a child because you AND your spouse are committed to each other. Have a child because it fills a need you have. Have a child because you want to be a parent.
I have told my kids since before high school, “Have fun, it’s important” not “Get married, settle down, have kid”
I’m glad I had my children. They are a source of Joy everyday. But…kids are too big a commitment to leave to guilt, or mothers, or mother-in-laws, or chance for that matter. On the hard days, ya’ gotta want ’em.
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@jillgerber4gmail-com
Hi Jill
I had a double lung transplant May 31, 2016 after 5 years with IPF. I work as an IT professional, I was traveling quite a bit before IPF 10-20 trips a year. I was is decent ‘IPF’ health in May of 2016. I worked right up to the day I got the call from the hospital. After the transplant, I was out for 5 months healing and getting my strength back. I went back to work full time in Oct 2016. Because I’m an old IT professional, I sit on my behind most of my day. I have been working from home for almost 10 years now. My employer allowed me quite a bit of leeway on work-from-home. I’m almost 5 years with the transplant now. I was diagnosed with chronic rejection last year, just before COVID showed up. I am more tired now. As a work-from-home professional I have been able to work without many issues. If I had a more physical or less understanding employer, working would be harder for me. Some of the issues over the years:
1. Travel during the cold and flu season (now Covid)
2. Stomach issues, stomach ache, diarrhea. My drug regimen has been pretty stable, but periodically I can get very bad stomach aches and diarrhea.
3. Nebulizer treatments. At the start, after the transplant I was doing a home nebulizer treatment 3 times a day for 45 minutes. That would be pretty disruptive for work. Those stopped in my 1st 12 weeks after transplant.
4. Memory loss. I have a pretty hard time remembering things these days.
5. FATIGUE – I have nowhere near the stamina I had when I was 50. (Who does? HA HA) I have watched my stamina increase after the transplant, and decrease after the chronic rejection. I can still work from home, but there are days I am very tired.
6. Lack of sleep, this may be just me, but my sleep is very broken up. Worse as it’s ever been. It probably plays into my fatigue and memory issues.
I am not sure I could have worked full time as a tradesman or construction after the transplant. Just doing simple maintenance around the house shows me weekly that I could not do those as a profession. Some of my transplant friends have had many more issues than me. White blood cell counts at 0, in and out of the ER 6-7 times a year.
I have gotten to be pretty good friends with 7 other transplantees. Their recovery were all unique, I believe only me and another engineer went back to work. 3 have passed, 1 retired after the transplant, and 3 were retired by IPF.
I hope this helps.
Dave
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@jayrom0807
Jay
I read your post and I really feel for you. The unknown is a massively scary place. I was diagnosed with IPF (Idiopathic Pulmonary Fibrosis) which is short hand for “I don’t know why your lung are turning into scar tissue. At that time there was no treatment and the diagnosis was an estimated 3-5 years mean time to failure. I was, in essence ‘waiting to die’. Very upsetting. After the tears and going through numerous tests and what ever stages of grief I could muster the energy for, I decided ‘waiting to die’ was a poor plan. After all the doctor visits, and a solid diagnosis, I decided that I need to do something, just for my own sanity. I talked to my pulmonologist and went to clinicaltrials.gov and found a stage 3 trial near me. That was 9+ years and a lung transplant ago. I’m still working, driving, hiding from Covid-19, same as the rest of the population. I’ve watch both my kids graduate high school and college.
I believe being scared of the unknown is natural, as well as being depressed with such a crappy diagnosis is a sane response. I know ‘waiting to die’ is not how I handled it. On a larger stage, everyone born is waiting to die. The fun I’ve had between the ‘born’ and the ‘dead’ part is what keeps me doing what I do. I know in my heart, this will all end some day. If I believed the ‘3-5 years’ MTF 9 years ago, I would have missed out on a lot of good times. My lung transplant has about a 5-10 year life span, and I’m into year 4 with chronic rejection. I’m still ‘waiting to die’, but I’m still having fun. No one knows how much time they have left, but I know ‘waiting to die’ in no fun, and ‘going to Aruba’ is fun. So I’ve been to Aruba 5 times in the last 9 years while I’ve been waiting. That’s just how I see thing, I understand there are many different ways to handle stress, fear, and the unknown. I tell my kids, remember to have fun, it’s important.
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Hey Mark
I was diagnosed with Chronic Rejection – BOS at the beginning of this year, about 3 years and 8 months after transplant. PFT were down +/- 10% to 18% depending on how you measure. My wife and I spoke to the pulmonologist we trust the most and started looking a experimental trials. We ended up at photopheresis, which is not really experimental, but Medicare (currently being trialed) does not cover it because is did not go through a trial. Luckily I have private insurance that covers the procedure. It’s a fairly lengthy procedure at the start, you get a “port” inserted under your skin to pull blood. The port is about the size of your thumb, and requires day surgery to get it installed. Then I go to the infusion clinic twice a week every week (4 weeks), twice a week every other week (2 months), then twice a week every month (9 months). Each visit take 4-5 hrs depending on how thick your blood is that day. The clinic pulls 1 liter to 1.5 liters of blood, spins it, irradiates some small portion of the blood (white blood cells or T cells, I’m not sure) and pumps it back in. Great fun. The procedure seems anecdotally effective. My PFT FEV1 increased after the 1st bunch of treatments.
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Hi guys
The title caught my eye. I’m 4+ years post transplant (May 2016) and I recall 20 months post, back at work on a travel assignment. My hands were shaking so bad I could not use a computer touch pad. I had to get a coworker to ‘help’ put my cursor on an excel spreadsheet cell. How embarrassing. I started carrying a mouse with me. I did not try and address the tremors with more or less meds, just tried to ignore it. My voice is more rough, scratchy and hoarse now. I think something was damaged during surgery. I never inquired, I thought it would get better. It did, but I still sound like an old man (luckily, I am an old man). My tacrolimus has steadily been decreased and the tremors have gotten better. I’m not sure of the cause and effect there, but I can use a touch pad these days. I still always carry a mouse.
To answer Mark’s question, my entire life has changed due to the transplant. I’ve moved states to be closer to the transplant center, I’ve lost 20+ lbs because I cannot eat the same ways as before the transplant, I avoid the sun like a vampire due to the instance of skin cancer on these meds. I avoid crowds, and not just because I’m a crabby old man and Covid-19 made it acceptable. I carry hand sanitizer in my truck, on my desk, when I leave the house. I do not work on my car or yard because of how fast I get tired. I cope one day at a time. I knew my life was going to change after the transplant. It’s like having kids. I knew my life as I knew it was over. Now, like then I try and get through one day at a time and try and plan for a future that is so nebulous that my plans feels more like crossing my fingers and hoping than a well thought out guide. It’s still fun, tremors and all.
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Michael
I’m 4+ years out from my transplant at St Joes in Phoenix. I currently take 16 different meds and vitamens morning and night. At the start of this transplant it was more, probably around 20, including some serious antibiotics and nebulizer drugs. I recall pain killers I did not use and testing for blood sugar. Those stopped very quickly after I was sent home. I was in Phoenix for 12 weeks after I was released from the hospital. The 1st month I was going to “clinic” several times a week, by 12 weeks I was down to once every 2 months. It got down to once every 3 months. For 4 years I was remarkably free of crazy symptoms, white blood cell counts at 0, tacrolimus levels too high, liver enzymes wrong, etc. No emergency room visits. I moved to Phoenix 2 years after my transplant to make the visits easier, figuring they would increase as the transplant “aged”.
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Hi John
Sorry to hear you’re a newbie to the world of IPF. IPF is scary enough without Covid-19 running loose in the world. I, sadly am not a newbie, I was diagnosed with IPF in 2011. The initial diagnosis was seen on a simple xray and confirmed with a CT scan. My original Pulmonologist was not familiar with treatment and immediately referred me to National Jewish Health in Denver CO. At National Jewish, I had additional tests, CT Scans, X Rays but no biopsy. They also confirmed a diagnosis of IPF. Like a fish on a hook, I fought and thrashed to get a better diagnosis at 1st. In 2011, there was no approved drugs or treatment, just wait for the next PFT to confirm I was getting worse. I definitely felt better getting a second opinion, ha ha, not that it changed the ultimate outcome. I recall the question of a biopsy coming up. My wife and I heard enough biopsy stories to not push too hard to get one unless the Docs recommended one.
One way to look at IPF is this: In my life there were VERY FEW events that affected my life and those around me as severely as IPF. The original IPF diagnosis has daily implication on my life and my family’s life to this day. The cost, limitations, disruptions and general Pain-in-the-A$$ness of IPF and it’s subsequent issues were worth the week I traveled to Denver to get a full workup to rule out anything/everything else.
Just the ramblings of an Old IPF/Lung Transplant guy with a truly questionable memory.
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Ha Ha HA. Toxic Positivity, what a concept. I have not heard that term before, but I instinctually feel the truthiness of it. What struck me in the article is the heading, “The right way to be positive”. REALLY?!? Seems a little judgy. I suspect most people are positive or negative in any given situation based on their own history and outlook on life. Based on my own history and outlook, I’d spin “Toxic Positivity” to “Irrational Positvity” I see Toxic/Irrational Positivity all around me, everyday. I see it is the stock market, in the George Floyd protests, I see it in the phased reopening of the states. What I see as Toxic, others see as Optimistic. My thinking they are wrong does not make them so. The world would be a better place (for me) if everyone acknowledged I was right. I suspect that may not happen, In the mean time, I will try and avoid the Toxic and Irrational.
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Thank You Thank You Thank You
Megan, ( @megan-zetter ) for sharing your father’s story, for stepping up as a care giver and so eloquently writing of something so personal. When I was 1st diagnosed with IPF in 2010 or so, I searched for anything on what the end looked like. There was nothing available, and the unknown is quite a scary abyss to peer into.
Bill, ( @ramblingolfer ) for sharing your adventure, one of many I’m sure. For going out fighting. I was diagnosed around the same time and could not get on the pirfenidone study (too healthy) but did make the OFEV study. I lost my fight with IPF in 2016, but I did get to poke it in the eye on the way out with a new set of lungs.
Mark, for sharing your story and for moderating this forum.
Charlene, for being you.
I am Humbled and in Awe of you all.
Again thank you for sharing, I guarantee your time and effort are not wasted writing your thoughts and experiences.
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Silver Linings
1. Wearing a mask in public is fashion forward
2. The ‘old timer’ IPF Patients are Masters Level Social Isolationists
3. Working from home is no longer a “Reasonable Accommodation” it’s just Tuesday
4. You had N95 masks already
5. Being afraid of flu season is now a shared experience
There are so many things wrong with this list that I cringe reading it. I lost my fight with IPF 4 years ago, and now I have a compromised immune system due to the Lung Transplant Drugs. My life has been nothing but a continuous stream of changes for almost 10 years. Change is hard, IPF forces change, COVID-19 forces more.
Through it all, I try to smile and laugh at the spectacle of life, knowing it may end at anytime. But that was my life before IPF, it was just easier to ignore. Since IPF, I really try and enjoy the things in my life I can, knowing they can be taken away. I try and remember to thank my wife for the large and small things she does everyday to make our life easier. My Silver Lining in IPF and now COVID-19 is to appreciate what I still have.
Now, I have to go find more toilet paper 🙂
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Stephen
I’m coming on 4 years with a Double Lung Transplant. My wife was/is my primary caregiver, pre and post transplant. I had the xplant at St Joes in Phoenix but lived in Albuquerque at the time.
We saw two xplant patients that did not have one fulltime caregiver:
Patient 1 – P1 was from out of town, and used his two sister to tag team his care together while required to stay in Phoenix (Minimum 12 weeks). He did OK with that setup, and went home to Albuquerque eventually. It was longer than 12 weeks, I do not remember the details. He died of skin cancer 4-5 years after his xplant.
Patient 2 – Fewer details, on P2. He lived in the same condo complex as my wife and I in Phoenix during the 12 week minimum stay. He was paying for a caregiver at the start of his post transplant care. He was quite unmotivated to exercise/work at getting better after the surgery. My wife talked to the caregiver several times. I’m remembering that the caregiver did not last the whole 12 weeks.
Note: Each transplant recovery that we know about was very different, 12 weeks was the minimum stay after the surgery, but that was with no major complications. My original hospital stay after surgery was 10 days, but I was readmitted two more times in the 12 weeks after I was released.
The 1st 8 weeks of my recovery was very busy, I needed real caregiver help. I did not have any strength and stamina, could not drive a car, and there were meds and injections that I did at home that required an intelligent caregiver, I was put on a liquid only diet, I felt awful…
I’m told that the caregiver is a big deal at St Joe’s now. Maybe it was 4 years ago, but not a problem for my particular situation.
As I reread this post, I sound negative. I do not mean to be, but I wanted to give as realistic a version of the post transplant recovery as I can. There were several times in the 1st 12 weeks that I needed more than just help. I questioned if this was a good decision, if I would ever feel better, if I would actually get to leave after 12 weeks. Those were the times when my caregiver needed to be more than paid help. Just my story, I’m sure there are others that are very different.
On the bright side, since the transplant, I just returned from a week on Aruba with my caregiver, I saw my son and daughter graduate college. So, life goes on…
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Hi Luis
That is a tough general question. For my particular situation:
I am 4 years into my lung transplant. I lived in New Mexico and had the xplant at St Joe’s in Phoenix AZ. I had pretty good insurance through Presbyterian Health in New Mexico.
There was the requirement I live in Phoenix for a minimum of 12 weeks with no major complications after the operation.
I moved into a condo across the street from the hospital (4 months rent $10K)
I had one ER visit while in Phoenix during the transplant workup testing. ($1K)
The transplant meds probably ran 2K+ the 1st year ($2K)
I’m pretty sure I hit my insurance out of pocket max ($4.5K)
While in New Mexico I had to return to Phoenix for regular Lung Transplant Clinic Visits (PFT, xray, blood test, Dr visit). It seemed like I traveled at least 5-6 times in the 1st year. Travel, hotel, food for my wife and I ($3K)
When I went back to New Mexico I had to upgrade my Air Conditioning, the swamp cooler was frowned upon, and my well water was not going to cut it so I had to put in refrigerated air conditioning and a reverse osmosis system. ($18K)
Indirect costs were my wife wife lost a couple of months of work while we were in Phoenix, my battery died in my truck because you are not allowed to drive with a cut chest.
My out of pocket for the 1st year was ~$38,500. I recall it being a alot. I was able to deduct medical expenses that year.
Since then I usually spend $2K on meds and do not hit my out of pocket max on insurance $4.5K.
Your situation may be completely different due to your insurance, where you live, you home’s cooling and water.
Good Luck
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Trish, @patriciadubose
One of the PF Forums is for Lung Transplants. It has this link: https://www.srtr.org/ for comparing transplant centers. Jacksonville Mayo is on that list and so is Shands, choose lungs at the top and it shows you all the Lung Transplant Centers and their Stats.
Tell your David, good luck, I hope he gets what he wants.
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@patriciadubose
Hi Trish
After going through the eval process at 2 different transplant centers, I know the transplant criteria is different at different centers. I was evaluated at Univ of Colorado in Denver and St Joes/Dignity in Phoenix. I ended up at St Joes/Dignity in Phoenix in 2016.
Along the way, my wife and I have met many Lung Transplantees. One of our friends was denied at Duke University, and accepted at St Joes. Another person we met was denied at St Joes and accepted at Univ of Colorado. The wait times for lungs also varies greatly.
The St Joe’s program has become a monster, I believe they are the busiest lung transplant center in the US. I waited 4 days on their list over Memorial Day weekend 2016. Some of the people we’ve met have waited for months depending on their physical size and antibodies. Each person’s situation and insurance is different, but so are the different Lung Transplant Centers. I’m glad I ended up at St Joes in Phoenix, but the time leading up to the transplant and all the decisions you make can be stressful.
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Hi Mark
I wanted to add a “different” point of view on the sugar topic. I was at an Indiana University watch party for an IU football game and struck up a conversation with a young man, probably 30-35 years old. He proceeded to tell me he was on a low/no carb diet and had started intermittent fasting. I asked him if he planned to live forever<span style=”color: #52565a;”><b>.</b></span>
He did not have a real answer to my question, but after losing to IPF and getting up every morning to tilt at windmills with someones else lungs, I refuse to give up sugar, red meat, french fries, pizza, vacations, and the general nonsense of life.
This is from Jason Isbell – If we were vampires
If we were vampires and death was a joke
We’d go out on the sidewalk and smoke
And laugh at all the lovers and their plans
I wouldn’t feel the need to hold your hand
Maybe time running out is a gift
I’ll work hard ’til the end of my shift
And give you every second I can find
And hope it isn’t me who’s left behind
<span style=”color: #52565a;”>IPF was horrible and living with a Lung Transplant is rough, but I guarantee you, I hold my wife’s hand every chance I get, I enjoy every piece of bacon, egg cooked in grease, and the meals I’ve made out of pop cycles. I never planned to get out of this life alive, but I do want to have fun while I’m here. </span>
<span style=”color: #52565a;”>This is not a philosophy for the faint of heart, it take true dedication to be as selfish as it sounds. Luckily I had decades of practice before IPF ever showed it ugly face on my door step.</span>
Just another way to wander through life.
Dave 🙂
<span style=”color: #52565a;”> </span>
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Hi Charlene
After 5 Years of IPF and 4 years of Lung Transplantitis, I still feel a little self conscious wearing a mask. (RZMask can make a real fashion statement)
Mainly I have come to embrace wearing a mask, I enjoy scaring small children and my fellow Southwest Airline travelers. I wear a mask on an airplane as if my life depended on it 🙂 During boarding, I try and cough and sound really sick. I cannot tell you how many times the seat next to me is the last seat taken. Granted, I an not young and trying to look good with a mask and a chronic lung disease. Looking like me, that may be asking a bit too much.
I’ve been told I look like Bane wearing my mask.
Probably not a compliant to a young lady, but great for keeping the middle seat open.
When IPF and the new Lungs give me lemons, I throw them back, take comfort in my awesome ability to deny the most obvious health and memory related problems.
When all else has failed, and I am left with just reality to deal with… I’ll let you know when that happens 🙂
Dave
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Mark, that’s great on the tamiflu. I avoid people, eating out, etc during the cold and flu season. I did not know tamiflu was that effective. So far I’ve escaped the flu as an x-men 🙂
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The title makes me shake my head and laugh
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Hi Nancy
I did not see your question until just now. I saw Dr Tokman as the primary pulmonologist, but there were several doctors involved, Dr A… Dr P, and the surgeon was “The young good looking guy” 🙂 (My wifes description, not mine)
I was 55 when I received the new lungs. 2021 will make 5 years.
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John, I applaud your effort. I have hand sanitizer in my truck and desk. I travel with several small bottles because I lose them so often. I also avoid coughing and sneezing people when I’m out and wear my mask when I’m on a plane. I also drink elderberry tea, but because I like the tea. I started when I was an IPF patient. Having lost my battle with IPF, I am now a lung transplant survivor. I chuckle at the comment to assist my immune system since I actively take drugs to suppress my immune system. The thought of a flu as a transplant patient makes me cringe. Good Luck