Huff n Puff Forums

Joined: 22 Dec 2002 Posts: 2269

From: Ron Groen
To: Holly
Posted: Sat Feb 08, 2003 10:06 am
Subject: Hello
"Hi,
Yes, status quo is a good description for the time being, although I am feeling a bit more stressed just walking in the condo with 8L O2. I try to project what happens when I need more than 10L, which is the most the concentrator puts out....
Take care, Ron"

Ron, glad to see that you still walking around a bit. I hope you haven't had too many times when you felt you needed more than the 10L the concentrator puts out. What sort of activities bring this on, and what were you able to do or how long did it take to feel a bit better? I can't begin to imagine that feeling, but so admire that you continue to push on through all of this and take care of things in yours and your wife's daily lives such as negotiating for a car of all things! You are quite the man, Ron Groen! You are a true role model of courage and faith! I agree with Bill, it's in the point of view and the attitude you have!

Joined: 23 Dec 2002 Posts: 23 Location: Boynton Beach FL

It's interesting being asked what activities increase SOB, because I honestly don't know. Here's a thought...since my cold is gone and I'm no longer taking Actimmune, I've only been using 2 or 4 Tylenols daily basically to control my dry cough. As an experiment, I stopped the Tyl completely yesterday, just to see what happens. Result was no increase in coughing, but noticeable need for additional O2. Today, I went back to the Tyl, and felt much less stressed walking the condo. I never knew Tylenol to make you breathe better, only to mask some ailments. Does anybody have thoughts on this?

As for being productive before the inevitable, I've said before I refuse to sit in a corner and wait to die. If anything, I need to do as much as I can before that time. Being a practical person, it never entered my mind that anyone else in my situation would do things differently. What am I missing here? I'm negotiating for the new car now so my wife won't have to do it. Isn't that just plain common sense? I'll stay in touch.

Ron

Joined: 24 Dec 2002 Posts: 6

I also have to use 10+ tank to move around our house or outside to keep my 02 up. If I am sitting or standing or laying I can go back to 3.5 to 5 depending on what I am doing. I like you refuse to sit around and wait. My husband cannot drive due to diabetes and losing sight so I do all the driving and have for 2 years with oxygen and with no problems. The problem is changing from small size to large when I get in the car. There hardling anything I can do for myself now accept dress, shower. My husband is a god sent to do most of the house work and I am trying to teach him to do most of the cooking. My low 02 is due to my legs not holding me up. They approved me a power chair and that was a great help as we can go to mall etc. now where there might not be a motorized chair. I went through a bad time in October and am still trying to get back from it and then we hope to do some short travel again, which we did before. I also did rehab up until then but am afraid I might not be able to ever get back but time will tell.
There is a lot of times I get very depressed at having to watch my husband do so much and wonder if it is worth it. My first plan was to make it until October which will be our 50th Anniversary so I am getting closer and maybe that is what keeps me going.
I like you have people say they don't know how I do it but like I say you do what you have to. Without family and friends I don't know if I could keep going on but sure would try.
Jan

Joined: 23 Dec 2002 Posts: 36 Location: central Florida

Ron....In response to your question about Tylenol helping with the breathing, my pulmo doc has prescribed hydrocodone tabs and liquid for me to reduce coughing, and with the tabs alone, breathing is definately easier...could be the acetaminophen in the tabs. Many thanks for all of your good info. Billfl.

Posted: Tue Feb 11, 2003 10:09 pm

I visited my local pulmonologist today and I asked him about the term "end stage." It is one of the classifications for the study made on the biopsied tissue. He said that the pulmonologist and the surgeon develop a plan of sites in the lung tissue to sample so that they get a good representation of the quality of the lung. They try to sample good tissue, bad tissue and intermediate tissue. We know that the IPF advances through the lung so that a person may have an "end stage" diagnosis at one location and overall the lung can still be performing quite well.

For the patient, the real story is how rapidly the PF is advancing and that is monitored by x-rays, CT scans, PFTs and similar tests. There is certainly no universal rate of advancement of the disease so one simply has to follow the lung function with the passage of time.

Joined: 29 Apr 2009 Posts: 1

Hi. I have found this website and have been reading for hours now on everything related to IPF. I already feel like I know some of you, and yes, my sympathy goes out to all who are struggling with this horrible disease.

I have a relative with IPF. Has anyone else had a problem with cellulitis. My relative does and I wondered if it is common. My relative ended up in the hospital with sepsis but is now at home trying hard to recouperate. The swelling in legs causes cellulitis. Is this swelling common?

Any suggestions for that horrible cough that takes your breathe away with IPF, cellulitis or swelling would really help.

Thank you.

Posted: Thu Apr 30, 2009 1:43 pm

I had cellulitis last year..i don't envy anyone with it..I am not sure if it has anything to do with the disease process..I have swelling in my legs.I take a water pill. mydoc just prescribed Hose to wear to help disapate the water..whatever...What did the doc say? be sure and tell the doc about any leg swelling.The cough, i drink a hot cup of tea, take an inhaler that helps..When I am on prednizone I don't cough much..read some of the old posts. there were some good suggestions..2008
Callie

Joined: 20 Apr 2009 Posts: 127

I thought it would be fitting to post the rest of Ron Groen’s threads/posts here to complete the story. I hope that is alright.

UPDATE 2/16/03 thread
Posted: Sun Feb 16, 2003 11:27 am

Ron Groen wrote:

Had a real scare last night. We were all sitting around the dining room table shooting the breeze for about 3 hours. As usual, I was very comfortable just sitting there. Then I got up, apparently too fast, to go to the bathroom 20 feet away. By the time I got there I was gasping badly for air, even with 9L of O2. In the past, the SOB would subside in less than a minute, but last nite it didn't. So after 3-4 minutes of struggling to breathe, I finally took my first dose of Morphine drops under the tongue. The breathing improved quickly, although I'm not sure if it was the Morphine or just a time factor. Whatever, it frightened me, and I think I have a handle on how to prevent this in the future. Today, after sitting, I stood up and stayed there standing until my breathing was normal before I took any steps. Then the slow walk was uneventful. We'll chalk that up to "Live and Learn", and also to remember that I must act differently after sitting for a long time. Any comments? Ron

Posted: Sun Feb 16, 2003 1:33 pm

Holly wrote:

I'm glad you posted that for others to know about. I think as the muscles get less oxygen, you are right to stand for a while until you catch your breath. Your body must be metabolizing things completely differently now and the act of just standing is taking a lot of energy. When you went to the doc last time, did they try to do any PFT testing? Do you know what your last dlco was?

Posted: Wed Feb 19, 2003 8:53 am

Jan-Tx wrote:

I have to do the same thing and thought it was me being weird! If I start to get up and try to head off walking my legs just won't move. It's like they have to remember what they are supposed to do and it is too painful just take off. They seem to "lock up" so I wait till they are ready!

When did it happen that different parts of our body decided to do what they want!

Posted: Sat Feb 22, 2003 8:01 am

Bill wrote:

Ron,

I wonder if what you describe is rather normal but taken to extreme because of your lung disease.

I remember 50 years ago when our family first got a TV. I would lounge on the floor before the TV. If the doorbell rang I would jump up and head for the door and almost faint.

I also remember in the first weeks after my transplant getting up in the night and having somewhat the same experience. At that time I learned to do as you mention, get to my feet, pause a moment and then move ahead. I'm unaware that I'm still doing this, but I wouldn't be surprised if I am.

Is it that the body gets so relaxed that it takes a moment for the heart to quicken and get the oxygen supply going throughout the system?

Bill

Posted: Sat Feb 22, 2003 9:49 am

pat wrote:

Ron,
I have had simlar experiences and it could be related to orthstatic hypotension (low blood pressure when standing) or anemia. I have had anemia requiring blood transfusions several times since my transplant and each time I experienced the symptoms you describe. I was anemic during my illness also I think the cytoxon I took started the process. I now take procrit and it is keeping the anemia at bay.
Pat

Posted: Sat Feb 22, 2003 11:57 am

Holly wrote:

Haven't heard from you in a few days Ron. Hope all is well and that you've worked out your routine!

Posted: Sun Feb 23, 2003 6:40 pm

Ron Groen wrote:

Did a stupid thing a few days ago - my plastic O2 tube got stuck under my office chair, and as I tugged on it, it came apart at the plug-in joint. As I went to free it, the chair wheel was firmly on top of it, so, of course, I lifted the chair to free it, without any oxygen. That was a mistake. (Although I really didn't have any other option) I was immediately gagging uncontrolably, and used the Morphine to relief the stress. Fortunatlely, it worked within 2 breaths, and I was OK. But these unexpected things that come from nowhere are frightening. Otherwise, I'm status quo. Don't go out anymore, walk in the condo when up to it, wheelchair when not. More walking than wheelchair, although it's now a very slow, controlled walk with rests as needed.

Holly, you asked about my DLCO's. I'm not sure what figures to give you, but I'll try. My first one in 2/99 was 21.5. All the others in between were progessively lower. The last one in 11/02 was 18.1. Is that meaningful to you? Frankly, I pay more attention to how I feel than what the tests show. Probably from ignorance.

Thanks everyone for your input. It is appreciated. Best. Ron

Posted: Sun Feb 23, 2003 9:34 pm

Holly wrote:

Ron,
your heart must still be pretty damn strong - despite what you've put it through! Laughing

Really, yes, that must have been pretty scary! Well, live and learn. They say ignorance is bliss.

Posted: Mon Feb 24, 2003 8:55 am

Bill wrote:

Ron,

Be aware that as you share with us we are being encouraged by your strength and determination to live. Thanks.

DLCO references the abilitiy of the lungs to take in oxygen and release carbon dioxide. For IPFers it is probably the most significant reading in a PFT (that is an unprofessionals opinion). In the broadest terms the number is a percentage of lung function as related to what is expected for a person of your weight/height/etc. Your key lung function is running at about 20%. However, it appears to be stable. As all of us know it is difficult to get reproducable results in PFTs so they are said to be accurate to about 10%. In your case that would be DLCO = 20 plus or minus 2%.

You are right in looking at your actual functioning as a test of how you are doing. I am constantly amazed at the ability of we humans to adapt and thrive under new and difficult circumstances. Ron, you are a hero in the world of pulmonary fibrosis.

l'Chaim,
Bill

Update 2/28/03 thread
Posted: Fri Feb 28, 2003 8:18 am

Ron Groen wrote:

Regretfully, still in a downhill slide. Walking in the condo with 9L O2 has become so difficult I now use the wheelchair to get around. Even the effort to get in/out of the chair causes SOB for 2-3 minutes.

Interesting discussion with the hospice nurse. She tells me the morphine drops under the tongue can be used BEFORE I get SOB. I never considered that. It seems like taking an aspirin before you get the headache. Does anyone have thoughts on this? Ron

Posted: Fri Feb 28, 2003 9:30 am

Jules wrote:

Do whatever you have to do to stay comfortable. My thoughts and prayers are with you and your wife. Jules

"Cast all your anxieties on him for he cares about you." I Peter 5:7

Posted: Fri Feb 28, 2003 10:17 am

Holly wrote:

Ron,
I've been wondering how you're doing. I'm sorry to hear it's still down hill. I don't know too much about the morphine since my dad only took it for a few hours before he passed. However, at one point, it seemed like he may have been halucinating, just for a short while. Like he was seeing someone or something that wasn't there, and he was upset or anxious over it, but we couldn't understand what he was trying to say at that point. The nurse then told us to give him more morphine, and then he seemed to calm down shortly thereafter and be o.k. We were never sure. Maybe you could ask the hospice nurse about this. But yes, taking it before hand can help. It "depresses" (slows down) the respiration center in the brain stem somehow, I believe. This makes the act of breathing seem easier, however I don't believe it actually gives you more oxygen, but rather maybe you get less, though it seems easier to breathe. Someone correct me on this if I'm wrong.

Posted: Fri Feb 28, 2003 10:59 pm

Holly wrote:

Ron,
Sorry. Embarassed

I'm not trying to scare anyone with what I said above about the morphine. However, you and others have said you wanted to know more about the very end stages and so I was just putting it out there. I didn't mean it to sound insensitive or however else it may have come across. Just informational.

Posted: Sat Mar 01, 2003 11:06 am

turtle wrote:

Ron....I can't tell you how much it has ment to me to be able to read your posts and share this ride with you, even from afar. I just want you to know that there are people on the forum who are following along with you, wonder how your doing, and appreciate you sharing the journey with us. I hope that as you are able you will continue to post and keep us up to date on how you are, as you have friends out here in cyberland, i being one, who just wanted to send an encouraging word and let you know i have learned much from your posts, and appreciate them very much.
I would like to ask you a question Ron. I am wondering if you have any heart involvement with the lung disease. That is, any heart enlargement, heart failure, and or pulmonary hypertension?
Hope you are feeling as well as you possibly can today.
Hugs, many
Turtle.

Posted: Mon Mar 03, 2003 5:02 pm

Ron Groen wrote:

Turtle, I did have a triple coronary by pass in 1992, although there was no heart attack. Last spring I had two minor heart attacks in the ER from the trauma of my broken nose artery.

Holly, you didn't say anything offensive, just told it like it is which is what we're supposed to do. Thanks for the input.

Interesting observation - I get very SOB switching from bed, or chair to wheel chair, even one or two steps. Learned yesterday the stress is much less when I use my legs to get up, while the SOB comes when I use my arms to push up. Anyone have a similar observation?

Best, Ron

Posted: Tue Mar 04, 2003 1:56 pm

T wrote:

Yes, Ron. A friend of ours was always feeling totally out of breath (on O2) when he switched positions, particularly trying to go to bed. It had become difficult for him to use his legs, but he did better that way. I believe he also started to use some morphine before he moved that much.

Update 3/9/03 and a question thread

Posted: Sun Mar 09, 2003 9:50 pm

Ron Groen wrote:

No remarkable changes - still great difficulty moving from one chair to another. Using 10L O2 from electric concentrator 24/7. Discovered that using another 10L from the portable gas tank works much better than drops of morphine when seriously SOB. Another observation-Hospice nurse suggested taking LOREZEPAM (ATIVAN) 0.5mg twice per day. This is supposed to be for anxiety, but I resisted it because I don't feel anxious and don't like to take more medication than I have to. But I tried it, and find that my walking a few steps is actually less stressful than before. Does anyone have experience with this medication and similar observations? Or is it all psychosomatic?

Best, Ron

Mon Mar 10, 2003 12:23 am

pgh wrote:

I am just trying this medicine, too, Ron. I honestly can't say I've felt much different. I tried just a part of a tablet, and now have tried a whole one several days---doesn't seem to be affecting me too much, but maybe I am a bit more relaxed. I will continue to keep you informed.

Mon Mar 10, 2003 7:53 am

Cindy S wrote:

Ron,

my docs had me take Ativan for a while when the 'usual' pain killers weren't controlling my abdominal pain. it relaxes muscles. I was tensing from pain which was just making it worse. the Ativan helped and the pain meds started working much better.

maybe the muscle relaxation effect helps counteract the natural tension that happens when you get short of breath. but hey, even if it is a placebo effect, no biggie. it helps and that's what is most important.

take care

Mon Mar 10, 2003 12:43 pm

turtle wrote:

Hi Ron....When i first became ill with ILD it hit me hard and fast...i was in the hospital for 32 days--I really didn't know if i was gonna come out. While i was in there, i was on 4L of O2 with o2 sats of 66%....i was very very short of breath. The doc's started me on xanax...it helped me tremendously...i don't know if physically, but certainly emotionally with the SOB feeling. I have a chronic pain problem (failed fusion of the lumbar spine,i have 4 screws in my lowback, 2 are bent and 2 are backing out), i have been on morphine for years....but the xanax really really helped the SOB smothering air hunger thing. I continue to take xanax low dose--it has helped me more than any anti depressant i have ever taken...and i would have never ever thought i had an anxiety problem....just my two cents worth Laughing

I hope you are feeling as well as you possibly can today.
Hugs,
Turtle.

Posted: Thu Mar 13, 2003 10:16 am

JanK wrote:

Ron and Turtle: I too take Xanax and have for several years. I had FMS at that time where my muscles contracted very badly. My doctor watched me at first so not to get hooked on them but now he knows I know what I am doing. Also he put me on the genric for Levsin/SL 0.12 and that will relax the muscles in my stomach and also in my kidneys when they are cramping and I don't have problems with my stomach or kidneys. It is only that the muscles want to contract. I have not heard about the one you are taking Ron but it may be because Xanax has worked for me.
Ron: I am on 2 concentrates in the house. My husband has a sight problem and could not see the hoses and they wanted to curl up all the time. So when my boys and daughter were here when I came out of the hospital in October they went to Lowes and bought 1/4" Split Flex Tubing and wrapped the two 50 ft. cordes in them and that way he can see them and they don't tangle up. I also have to use a tank to walk around the house so I came up with to put a 25 ft hose on the tank and went to Radio Shack and got a curly cord and wrapped it and now I don't have to drag the cart around which used a lot of oxygen and can get to bathroom and kitchen. So I wear two nansal cannula at that time which is no fun but works. I too can only go so far without stopping to rest as my oxygen will go too low. As long as I keep my legs from moving I can get by with the house machines at lower levels. Don't think I told you but I have IPF and am 68 years old and the doctor at MUSC in Charleston, SC told me he didn't know why but people past 60 do not handle transplants good and usually don't make it. But think the cut off age is 60-62. I have had this to my knowledge almost 3 years and have advance pretty fast as far as I am concern so don't know how much longer I have so I am sure I had it at least 6 months before I questioned my family doctor about it and he had me go for a lung test and he was able to tell me what I had. he said it was either PF or COPD and then sent me on to a pulmonary doctor at once. GREAT DOCTOR!!! Have had lots of side effects with Prednisone that they put me on in hospital and have tried 2 time and am trying again to come down to low amount and they have put me on Imuran. Hopefully this will finally work out. Also, I wish I had gotten a Oximeter 6-8 months before I did even though I had to pay for it and that was somewhat a hardship at the time.
Hope this gives you some help.
JanSc

Thu Mar 13, 2003 10:54 am

JanK wrote:

Ron: I forgot to mention one thing. You didn't say whether you were on one machine or two. I am on 2 which each one goes to 5. So have two tubes and at the end of the tube they installed a Y and hook the two hoses in the what would be the top of the Y and then the nasal cannula is hooked into what would be the bottom of the Y. So I don't have two cannulas on unless I am walking and using the tank oxygen.
JanSc

Thu Mar 13, 2003 3:56 pm

Ron Groen wrote:

Hi Jan,

I'm using an electric concentrator at a maximum 10L, 24/7. When I move, I also use a portable gas cannister that puts out up to 15L Since my movement is so minimum, (Usually to get from the wheel chair to a chair/bed, or visa-versa) I use two hose cannulas for those short periods of time, one orally and one in the nostril. I do have the Y adapter, but have no need to use it at this time.

While on the subject, I've been told that when the cannulas no longer do the job, I will have to start using air masks. I know very little about them, but assume they treat incoming O2 more efficiently. I tried a simple one that seems to work OK, but the one with an air bag attached seemed to require more breathing effort to use when I experimented with it. Anyone care to comment on this?

Thanks, and Best. Ron

Thu Mar 13, 2003 5:08 pm

JanK wrote:

I have used the mask at night sometimes. To me they are a real pain but do what you have to. You have to lift to take a drink, blow your nose etc. They told me not to use the one with the bag on for any length of time but not exactly sure but think they said I would get some carbon dioxide which supposely with IPF I shouldn't have that problem but they said for me not to use the bag one for long. Some people use them when they walk. I have used the one like they use in hospital at night when my sinuses are giving me problems but I don't see that I get more oxygen but it does relieve not having the cannula in my nose for a while. I just hate the band around my head.
Not sure I have heard of what you are using. I am going to ask my supplier. They were going to get me one that went to 8 and then see if I could walk but don't think I will be able to as the cannisters give out more air then the house one.
Keep in touch. Are you waiting for a transplant or are you also too old to get one.
JanSc

Thu Mar 13, 2003 6:21 pm

Ron Groen wrote:

71. Too old Evil or Very Mad

Ron

An Oxygen question thread
Tue Mar 18, 2003 10:38 am

Ron Groen wrote:

I'm currently using 10L O2 24/7 from an electric concentrator, the maximum it allows. When I move, like from my wheelchair to bed, I use up to 10L from a gas tank to suppliment, although for short periods. I can see the day coming when my 10L 24/7 will no longer be sufficient, and was wondering if it makes any sense to get another electric concentrator with 10L max and use them together with a Y tee for a potential 20L maximum.

Is anyone doing this, or heard of doing this? Would appreciate any thoughts. Thanks. Ron

Wed Mar 19, 2003 7:02 am

Holly wrote:

Ron,
I take it the morphine and the anxiety med in combination are no longer helping with this aspect? Did you discuss other non-ivasive forms of oxygen supplementation with the hospice folks, or won't they provide that stuff? Also, with that, I don't know if you can move around much or if you would be confined to bed with those? I hope you are doing as well as can be expected given the circumstances.

Posted: Wed Mar 19, 2003 10:19 am

Sandi wrote:

What you're suggesting (connecting 2 10L concentrators with a Y tee) is the usual course of action. I know of a couple cases where 3 concentrators were hooked up, but they might not have been rated at 10L.

For these patients who need to go out, there are liquid 02 portables that go to 15LPM.

Update 3/22/03 thread
Posted: Sat Mar 22, 2003 11:36 am

Ron Groen wrote:

Not much new to report, except the decline, albeit slowly, continues. It's so subtle that it's difficult to notice from day to day, but can be seen week to week. Here's a typical example. Last week I could manage to get from the wheelchair to the edge of the bed (2 steps) with 20L of O2. I would then cut back to my 24/7 normal 10L before lifting my legs into bed. Today, I need that extra 10L to get into the bed. Although I continue to manage, the nagging thought of what will next week bring is not particularly comforting.

Saw the doc last week for a routine checkup. He had nothing new to say, even suggested that if I did not feel up to a future visit, I could skip it. I'll play that by ear, since the hospice transport picks me up in the condo in my wheel chair, and I never leave it until back home, so the stress of that type of travelling is minimal. Stay tuned. Ron

Sat Mar 22, 2003 4:25 pm

Judy in NH wrote:

Thanks for keeping us updated Ron. It means alot to us to read what you have to say. Your postings are a truly selfless act of incredible generosity. When you're lifting those legs into that bed just think of all of us who are trying to give you strength and support and comfort!

Posted: Sun Mar 23, 2003 3:08 pm

Bill wrote:

Ron,

It is always good to hear from you. We will remember your honesty and courage as we each face our own future. Be aware that your story is blessing many of us.

Bill

Posted: Mon Mar 24, 2003 4:54 pm

Bennie wrote:

Ron, youre amazing!
Your life is a real "worthwhile" life, and you are living the experience, unlike many who will never know about the difference they made to the lives of others. Your life story is an education, and an inspiration. You will always remain a legend to many of us who have followed along with you on your journey. Your bravery and thoughfulness will definatley be rewarded in your future, but I really really hope you know just how much of a difference your life is now making to people all over the world (I live in Dublin, Ireland).

Take good care of yourself, you deserve the very best, now and always.
I can't do anything for you, but I would love to send you a big hug, and I hope that you can at least imagine the tonnes of love, affection, admiration and affection that are tumbling towards you from lots of different directions.

Keep that spirit strong!
Love, Bennie

Posssibly off topic thread
Posted: Sun Mar 23, 2003 6:02 pm

Ron Groen wrote:

I'm not sure where to place this question, which is: Is there any medical research use for my body when I die? I'm willing to donate either my body or my IPF diseased lungs if anything meaningful can be accomplished by doing so.

My intentions are obvious - that there will be some benefit for other IPFers down the road. My own situation is well prepared for death since I will be cremated which can be done at a later time.

If anyone knows of institutions or organizations that could make good use of my offer, please let me know so I can get in touch with them. Thanks for your help. Ron

Posted: Sun Mar 23, 2003 6:33 pm

pat wrote:

Ron,
A few years ago when I was on the transplant list for INOVA Fairfax, I signed to have my lungs donated to NIH. Apparently they were doing research on IPF at the time. I don't know if they are still collecting or not but you should check with your provider and he can search it out for you.
Pat

Posted: Sun Mar 23, 2003 11:41 pm

Holly wrote:

Ron,
contact the medical school at the nearest teaching hospital. They should be able to direct you and/or send you forms. I was thinking of this for my grandmother as a couple of docs have mentioned "interstitial markings" when viewing her chest x-rays.

Ron Groen has died. Thread
Posted: Wed Apr 02, 2003 11:09 pm

Ron Groen wrote:

Regretfully, I must inform you that Ron Groen died Friday, March 28, 2003, at approximately 10:15 AM.
I am Ron's youngest son Michael. It was Ron's specific request that I make this posting. I know he valued this site and found some comfort being able to share in information with others affected by this disease.
I am sorry that it has taken me so long to post however, there have been many things to do and take care of. I am in NYC and he was in Florida.

Ron had asked that I give some details as to how his death unfolded.
Through the 2 nights prior to his death, Ron found himself needing more oxygen than he could obtain from 3 tanks or 30 liters. Shortly after midnight In the early hours on the 28Th. Ron found himself needing the morphine drops every hour (in addition to the Oxygen) however the prior positive relief from the liquid morphine was at this time no longer providing him relief. He had also taken 3 Tylenol and one adavan and still could not seem to recover as he did in the past. This all took place from midnight to 5:30 AM.
Hospice was called every 45 min to 1 hour until about 7:30 Am when 911 was called. He was alive on arrival at Bethesda Hospital at about 8 AM.
He agreed when asked, and breathing tube was inserted. He didn't appear to be in much pain. He was calm. It is believed that Ron had heart failure. His body temp was 102.8 and an x-ray revealed pneumonia. It is believed that the pneumonia along with the disease overstressed his already week heart. He seemed to be at peace and in control at this time when he died.

A memorial service for Ronald T. Groen will be held on April 19, 2003 at 10 AM.
Seacrest Presbyterian Church
2703 North Seacrest Boulevard
Delray Beach, Florida 33444
561 276-2427
Family requests in leu of flowers or donation, please send contributions to:
Palm Beach Hospice
5300 East Avenue
West Palm Beach, Fla. 33407

Thank you,
The Groen Family

Thu Apr 03, 2003 7:25 am

BettyF wrote:

Michael, thank you for sharing this with us. My most sincere condolences to you and your family. We grieve with you.

Posted: Thu Apr 03, 2003 7:53 am

whacker wrote:

My deepest condolences to you and all of your family. Ron was a very brave man & will be sincerely missed.

Posted: Thu Apr 03, 2003 8:09 am

Bill wrote:

Michael,

Thanks for fulfilling your father's request and sharing information on his passing. If you have not done so, at some appropriate time, go back and read, copy and then save his posts in an album. You and the family will gain added insight into your wonderful father. You had a living father, now you have a father that lives not only in your memory but in the minds of so many of us here on the Huff n Puff forum. He has given us an example to follow as we face our own future.

God bless,
Bill

Posted: Thu Apr 03, 2003 8:39 am

Dori wrote:

I am sorry to hear of the Loss of our friend Ron, as I wanted him to be with us all forever. God give him peace. I will miss him. It was kind of him to let us know. I just sent him a nice uplifting private mail about a week ago or so. I needed to share my feelings Dori

Posted: Thu Apr 03, 2003 10:21 am

strayze wrote:

Ron was a big part of this forum, and I will miss him immensely. My condolenses to his loving family.

Posted: Thu Apr 03, 2003 1:01 pm

br6633 wrote:

Dear Michael
Thank you for sharing this sad news with us. Ron was a hero who inspired
us with his courage and strength. My sincere sympathy goes to you and your family.
Kathy

Posted: Thu Apr 03, 2003 2:09 pm

Patricia Dobler wrote:

My sincere condolences to you and your family. Ron was a very brave man who selflessly shared to last part of his life with us. God bless you all. Pat

Posted: Thu Apr 03, 2003 2:47 pm

turtle wrote:

Also, my sincere condolences to Ron's family and friends~my heart is heavy with grief~as i know many of us traveled with Ron through this journey. Thank you Michael for sharing, just as your dad wished.
Sadly,
Turtle.

Posted: Thu Apr 03, 2003 2:49 pm

Peggy wrote:

Thank you, Michael, for sharing your father's last days with us. Bill said it all for us. Your dad inspired us so much we felt we knew him personally.
My hearfelt condolences to you and your family. Peggy

Posted: Thu Apr 03, 2003 3:53 pm

Deb wrote:

To Ron's family and friends:

All is Well

Death is nothing at all. I have only slipped away into the next room. I am I, and you are you. Whatever we were to each other, that we still are. Call me by my old familiar name, speak to me in the easy way which you always used. Put no difference in your tone, wear no forced air of solemnity or sorrow. Laugh as we always laughed at the little jokes we enjoyed together. Pray, smile, think of me, pray for me. Let my name be ever the household word that it always was, let it be spoken without effect without the trace of a shadow on it. Life means all that it ever meant. It is the same as it ever was; there is unbroken continuity. Why should I be out of mind because I am out of sight? I am waiting for you, for an interval, somewhere very near, just round the corner.

All is well.

Posted: Thu Apr 03, 2003 4:13 pm

pegd wrote:

My sympathies go out to your family. Ron will certainly be missed here. I learned alot from him.

Posted: Thu Apr 03, 2003 5:13 pm

julier wrote:

My deepest sympathy goes to you and your family at this sad time. Your father shared his experience so generously with this forum and has our respect for all he taught us.

Posted: Thu Apr 03, 2003 5:29 pm

Judy in NH wrote:

Dear Michael, thank you so much for letting us know. Your father was so courageous in his life and so generous in his participation here. My heartfelt sympathy to your family. May you be comforted by happy memories of your Dad.

Judy

Posted: Thu Apr 03, 2003 5:38 pm

Cindy S wrote:

Michael,

thank you for taking the time to let us know. my sympathies to you and the rest of your family. your Dad's willingness to share his experiences and his thoughts is something we all benefited from. he touched a lot of people here.

Cindy

Posted: Thu Apr 03, 2003 5:53 pm

janine wrote:

Your father was a brave man Michael sharing the details of his last days. We will all miss him. Prayers to you and your family. janine

Posted: Thu Apr 03, 2003 6:28 pm

pat wrote:

I along with all the others on this forum will miss Ron and his willingness to share. Thank you Michael for posting for your Father. You and your family will be in my thoughts and prayers.
Pat

Posted: Fri Apr 04, 2003 1:38 am

Grace wrote:

Your Dad was a special person and will be missed by everyone here. My prayers go out to your and your family.

Posted: Fri Apr 04, 2003 9:48 am

T wrote:

Thank you so very much for letting us know. I will miss him.

Posted: Fri Apr 04, 2003 11:39 am

pgh wrote:

Our sympathy to your family. Many of us here have learned so much from Ron's posts. Our prayers will be with you.

Posted: Fri Apr 04, 2003 6:32 pm

frieda wrote:

MY SINCERE CONDOLENCES TO YOU AND YOUR FAMILY. YOUR FATHER SHARED HIS EXPERIENCE TO THE END AND HS OUR RESPECT FOR ALL HE HAS TAUGHT US. BILL SAID IT ALL FOR US. MAY GOD BE WITH YOU ALL IN THIS TIME.
GOD BLESS, FRIEDA

Posted: Fri Apr 04, 2003 7:45 pm

Marcia wrote:

Dear Michael,
Thank you for telling us of your dad's passing. He was so courageous and selfless to share his last days and insights with us. He will be missed. My thoughts and prayers go out to you and your family.
Marcia

Posted: Fri Apr 04, 2003 7:56 pm

Linda D wrote:

Ron tried to prepare us by telling of his experiences. When logging on, I first looked for input from Ron...then went on to look at other posts. I'm sure I can eventually get away from this habit at some point. ... It was so important to know what he had to say. He had such a way of communicating with no self-pity. Just the facts. We all knew what to expect, but what a shock when it finally happens! As if no warning. I am so sorry for the family and for all of us. We will miss him painfully. Crying or Very sad

Posted: Sat Apr 05, 2003 9:14 am

Jules wrote:

Ron will be missed by all of us who have come to know him through this forum. May God bless and watch over his family in this difficult time. Jules

Posted: Sat Apr 05, 2003 2:36 pm

Bennie wrote:

I am so sorry to hear of the sad passing of a very brave and selfless gentleman. He didn't know all of us, but we knew and loved him dearly over this passed while. Meaningful words were what Ron shared with us, and I hope you can find some comfort in these few comforting words that I am now sending to you.
Ron will be forever in our thoughts. Thank you for finishing his contributions so sensitively. God bless you and your family.
Love Bennie

COMFORTING WORDS

To my dearest family, some things I’d like to say,
But first of all to let you know, that I arrived OK.
I am writing this from heaven, where I dwell with God above,
Where there are no tears or sadness, just eternal love.

Please do not be so unhappy, just because I’m out of sight.
Remember I am with you, every morning, noon and night.
The day I had to leave you, when my life on earth was through,
God picked me up and hugged me, and said, “I welcome you”.

God gave me a list of things, He wished for me to do,
And foremost on that list, is to watch and care for you.
And I will be beside you, every day, week and year,
And when you’re sad I’m standing there, to wipe away each tear.

And when you lie in bed at night, the day’s chores put to flight.
God and I are close to you, in the middle of the night.
When you think of my life on earth, and all those living years,
Because you’re only human, they’re bound to bring you tears.

But do not be afraid to cry, it does relieve the pain.
Remember there would be no flowers, unless there was some rain.
There are rocky roads ahead of you, and many hills to climb.
But together we can do it, just one step at a time.

If you can help somebody, who’s in sorrow or in pain,
Then you can say to God at night, “my day was not in vain”.
And now I am contented that my life, it was worthwhile,
Knowing that as I journeyed through, I made somebody smile.

When you’re walking down the street, and you’ve got me on your mind,
I am walking in your footsteps, just a half a step behind.
And when you feel that gentle breeze, or the wind upon your face,
That’s me giving you a great big hug, or perhaps a soft embrace.

And when it’s time for you to go, from that body to be free,
Remember you’re not going, but are coming to me.
And I will always love you, from that land way above.
Will be in touch again sometime,
P.S. God sends his love…!

Posted: Sat Apr 05, 2003 9:59 pm

libby wrote:

Michael-
I knew Ron only by reading his posts; but I had the feeling that he was a warm, caring and brave person. In spite of his pain, he allowed us to share in his struggles.
I am truly sorry for your loss.
libby

END of Ron Groen posts

I hope others will benefit in some small way from Ron’s very brave posts.
Sadly, I see that many, many of the responders to his posts are no longer with us. I’d like to list them here. If I get one wrong and you are still with us, please pipe up to let us know! This is in rememberance to all of them and to all of us.

Janine, Austin TX, last post - Sat Feb 02, 2008 7:18 pm
Pat S., Buffalo NY, last post - Fri Dec 27, 2002 12:57 pm
Holly, last post - Thu Nov 27, 2008
?Chris, Ruskin FL, last post - Fri Apr 16, 2010
PGH, last post - Fri Apr 04, 2003
Djalan, New Jersey, last post - Mon Mar 22, 2004
Judy, New Castle NH, last post - Wed Jun 21, 2006
Bill, Riverside CA, last post - Sun Apr 17, 2005
Logan’s husband, Smyrna GA, last post - Wed Jan 25, 2006
Br8833 Kathy, Canada, last post - Tue Sep 02, 2008
Nan McG, Springfield IL, last post - Mon Feb 10, 2003
JanK, last post - Thu Mar 13, 2003
Billfl, central FL, last post - Sat Apr 16, 2005
IPF Relative - Wed Apr 29, 2009
Jan-TX, last post - Tue Nov 25, 2003
Jules, Fort Wayne IN, last post - Wed May 21, 2008
Turtle, Albuquerque NM, last post - Fri Mar 14, 2008
Sandi, last post - Thu Oct 11, 2007
Bennie, Ireland, last post - Thu Sep 18, 2003
BettyF, IL, last post - Mon Nov 23, 2009
Whacker, IL, last post - Fri Nov 05, 2004
Dori, Minneapolis MN, last post - Wed Mar 23, 2005
Patricia Dobler, Pittsburgh PA, last post - Sat Jul 17, 2004
Peggy, Greenville SC, last post - Sat May 17, 2003
Deb, Tulsa OK, last post - Mon Apr 25, 2005
Pegd, Tampa Bay FL, last post - Tue Jul 26, 2005
Julier, Michigan, last post - Tue Feb 06, 2007
Grace, last post - Jul 09, 2009
Frieda, Wheeling VA, last post - Sat Aug 14, 2004
Lindad, CA, last post - Wed Mar 15, 2006
Libby, Riverside CA, last post - Tue May 31, 2005

Posted: Tue Jul 20, 2010 8:58 pm

Great job Solaria.

Joined: 12 Jan 2010 Posts: 558 Location: Michigan

Is the Holly on this list the one who helped Ron with his e-mails?MaryJ.

Joined: 31 Dec 2002 Posts: 1503 Location: Maryland

Yes Holly is still around and does keep up with what is going on. I sent her a PM and she responded right away with a link to some of the posts. I thank Solaria for completing the research it took a lot of time and effort.
Pat

Joined: 30 Jun 2005 Posts: 1959 Location: Wisconsin

Holly just wrote to me a few days ago.
Night all,
Pam

Posted: Tue Jul 27, 2010 7:56 am

I think Chris had to re-enter the forum under a new name. The last I heard from Jules she was still doing very well after her transplant. Glad to know about Holly!

Joined: 05 Jul 2010 Posts: 22

Yes,

End stage disease in IPF usually refers to the Honeycombing, not the time left.

I have "End Stage" disease and it refers to my honeycombing on the CT report. It says "Some end stage disease is evident"

Posted: Sat Sep 04, 2010 11:01 am

"Barking" passed away a few months back.