Daryl Long
Forum Replies Created
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Hello Pamela.
I just saw your posting, and I would have responded earlier, but I’m still rceovering from my own transplant. (5 weeks ago)
I as in EXACTLY the same situation as you: 72 years old and turned down by both MGH and Brigham and Womens’. Without going into too much detail, there was a gastric concern that both hospitals did not want to deal with. They both sent me away with no guidance as to where to try next. Knowing that I would need a support system where ever I went, I had few options. Fortunately, I had grown in theAnnapolis rea and still ha lifelong friends who would host my recovery. My BIDMC pulmonologist sent my MGH records to Johns Hopkins, who welcomed me for evaluaton. It turns out they have, in addition to a world class transplant surgeon, a very capable team of gastric resources. The looked at the MGH tests, ran a few test of their own, and I got listed. Because I was consuming 12L/min while walking slowly, I received a lung fairly quickly. The experience, so far, has been far better than I could have imagined.
The director of the transplant program is Dr Pali Shah 410-614-4898; but you would want your doctor to make the first contact. Please let me know if you want to pursue this. I’ll be staying in Annapolis thru December, returning to Mass in January, and I can give you more detail about the program, living in Annapolis, etc, should you desire it.
The bottom line, to me, is that each hospital, regardless of their overall rating, will have different capabilities in areas related to a transplant. So, don’t be discourages if a high-profile hospital won’t take your case. I wish that I could offer you the name of a clearing house for hospital specialties, but I haven’t found one yet. Your email inspires me to look harder for one.
Five weeks out, I’ve still got a long way to go, but I’ve never regretted my decision.
Please feel free to contact me, if I can help.
Best regards,
daryl
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Greetings folks,
I share the problem that many of us seem to have: oxygen drops precipitously when standing after sleeping, sitting, or driving. I don’t seem aware of it until it drops into the 70s. Out of concern for organ function and safety, especially driving, I check O2 frequently, and Oximeters have become an obsession for me. I was dissatisfied with most of the fingertip pulse oximeters that I tried. Often they couldn’t get a good reading and I found that the accuracy of the units that I bought was questionable. Even readings from identical units, from the same manufacturer, were off by 3-4 percentage points. So, I felt uncomfortable driving with that kind of uncertainty.
My physical therapy nurse used Nonin brand oximeter; it would sync up quickly, it worked equally well on any of my fingers, and it seemed less-susceptible to cold. It turns out that their devices are certified for use by the military, hospitals, and EMTs. Their list prices are high, but you can find them on eBay used or new old stock. I found a new Nonin 9550, at auction, for around $60. Since then, I found a 9560 for not much more $. So, keep checking until you see one that is more reasonably-priced. If you’re interested, the Nonin documentation has a performance video that illustrates my point.
If you don’t see a Nonin in your future, I would recommend the Zaccurate products. I’ve benchmarked a 430-DL against the Nonin. It didn’t sync-up as readily, but the saturation results were always within a couple of points.
I hope this information is helpful to someone out there.
Best regards,
daryl
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Hello Wendy, et al,
My diagnosis is hypersensitivity pneumonitis, which might be different from yours. However, I initially experienced the same sort of violent debilitating coughing which left me exhausted with aching abdominal muscles. This could be induced by cold air, hot air, humid air (pretty much any air), talking, and, as you say, laughing. I have often tried to use humor to take the edge off difficult situations. So, I used to joke that coughing was the only exercise I got, until the coughing discouraged any laughing, on my part.
A visit to my ENT produced a satisfactory solution. After testing various dosages, she prescribed gabapentin; 200mg three times a day. The reasoning was that the fibrosis was causing “unfriendly” interaction between lung tissues, and the gabapentin blocked the pain that led to the coughing. This may not be a medically accurate interpretation, on my part, but it is easy for me to imagine. I’ve been on this dosage since February, and it has effectively eliminated the violent coughing. I do still cough on a daily basis, but it seems to be caused by post nasal drip, and it isn’t painful. An unexpected “delighter” was a reduction of my sciatica pain.
Gabapentin does have side effects, which must be balanced against the benefits. For me, the most significant side effect is a general numbness, especially in my feet and legs. This causes me to be a bit unsteady and I probably have a bit of a gait. However, the violent coughing was actually scaring people; some worried about being infected, others worried that I could be having a real medical emergency.
I can appreciate what you’re experiencing, and I hope you can resolve or minimize it and start laughing again.
Best regards,
daryl
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Greetings all,
I’ve recently grown from being in denial of my condition to embracing how oxygen can improve my life. A trip to the hospital for pneumonia served as an additional incentive. My doctors gave me a prescription for 2L/4L (rest/exertion). The oxygen company supplied a 50 pound soviet-styled 5Lpm stationary concentrator which covered my needs while at home, and a farm of D and E tanks for mobile use. However, the company does not supply PoCs.
My wife and I wanted to resume travelling, hiking, and camping, so I sought a better mobile solution. I purchased, new, an Inogen One G3, which supports ~5Lpm and is easy to carry. I opted for the larger back pack for hiking. My experience has been good, although there was one failure. The supplier fixed it, but I was stranded for about 4 weeks. I decided to buy a back-up unit. Inogen sells back-up unit packages, but they were expensive. I found numerous units locally on CraigsList for $1,000 to $1,200 and bought one with low hours. I recommend testing any unit before you buy it, and you can read the hours by holding the “Bell” button while it powers-up. The nature of these devices means that the seller has had a similar experience to yours or have expperienced a loss, and we shared stories and support.
The pulsed output and motors of the G3 are a bit noisy. When I don’t want to sound like Darth Vadar, I carry a D tank in a back pack.
Aircraft are pressurized, but not to sea level. If you want to fly with a PoC, you will need to get tested by your doctor to guide you on your stationary requirements, so that you can know the right flow rate and how many batteries to purchase and carry in the cabin. I also used this info when driving through the Rockies.
Regarding the need for a prescription: While this is often ignored, a proper seller will ask to see yours; so bring it with you. I copied mine from the hospital’s portal.
At this point, you might want to consider future oxygen needs. Inogen recently introduced a 6Lpm (pulsed) machine, which I’ve seen priced at ~$2,800. It is also purported to be smaller, lighter, and consume less power than the G3. You may consider starting with this, so that your investment is protected over a longer period of time. I think that there are other brands that support 6Lpm.
We then went after a more convenient stationary solution for overnights and camping in our trailer, since I can no longer lift 50 pounds. Inogen makes a GS-100 5Lpm continuous unit, which is smaller, lighter, and quieter than my large unit. It also is more convenient to lower the flow for sleeping. You can find these on CraigsList for ~$750-$1000. The hour meter is in a small recess on the back. You might want to download the manuals before you buy, so that you can become more familiar. I use the GS-100 upstairs for sleeping, to avoid long tangled tubes.
I’m offering my experience to help you get started. Please don’t consider it to be a recommendation, since my experience is relativly limited and I have, admittedly, taken short-cuts that you might want to avoid.
Wishing you good luck and good health on your journey,
daryl long
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Hello Charlene, et al,
Once I left the “Denial” stage, and I realized that I’d be using oxygen a LOT if I wanted to enjoy life or just get things done, I quickly noticed that there were issues to solve and I’d have to “Turn Pro” to improve things. I first noticed the cannula problem when I saw what I feared calluses developing in my nostrils. Also, the rigid tubing would pop off my ears. After exploring the Amazon, I found these cannulas. (Adult Ultra Soft Oxygen Cannula, green tubing – 7 Ft (Westmed #0556) pk 5). They treat my nostrils better, and the compliant tubing hangs over my ears more securely. I could only find 7’ versions, which is awkward for my POC, and it puts the connector on the floor, where it sometimes catches on furniture. Next, I looked at the tubing. The tubing with the concentrator was 50’ long and fairly rigid. It was constantly twisting and, worse, the loops would catch on furniture and wall corners. I hadn’t learned to walk cautiously, yet. As the tubing caught on furniture, I was constantly being snapped back by the nostrils. It’s very hard to look “Pro” when that happens. Also, getting the twists out of a 50’ tube was tedious and frustrating. I found kink-resistant tubing on Amazon (Replacement_Oxygen Tubing_Kink Resistant Oxygen Supply Tubing – 25′ Blue, Pack of 2). The longest length was 25’, so I got two and a swivel coupler (Oxygen Tubing Swivel Connector, Swivel Connector 1220, 1 pack). Now, the tubing lies flat on the floor and doesn’t get twisted. However, the connector in the middle does catch on furniture.
My next challenge is to learn how to walk more deliberately, so that the tubing doesn’t wrap around my ankles like a pet’s leash. I wonder if anyone has any suggestions. Of course, what I really want is an oxygen distribution scheme that works like WiFi!
Regards to all,
darylI’m not sure that hyperlinks will work, so I included the Amazon part descriptions
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Greetings All,
I’m new to the forum, and just starting to scroll through the topics.
For the first year, I was in denial over needing oxygen, and was uncomfortable being seen using my portable. I didn’t want to admit to my limitations. Consequently, my activity was very restricted, and I ignored opportunities for perks. (I call this my “Oxy-Moron” phase.) That changed when we drove to the Grand Canyon. We were at altitude, so I was using my portable in the car. At the canyon entrance, the nice ranger saw the cannula and asked me if I used supplemental oxygen. The outcome was that she gave me a special pass. The road to Hopi Point, a great area for photography, is normally closed to private vehicles. Only buses have the code for the gate. This pass allowed us to drive the care toward Hopi Point, stopping where ever we liked. Due to the car restriction, there was plenty of parking everywhere.
Not everyone wants to drive to the Grand Canyon. But, if you do, be sure to wear your cannula.
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Greetings @falguni9003,
The Inogen One G3 and an identical OxyGo G3 support 5L pulsed. These are portables, suitable for airline use. I would note that at the 5L setting, the device consumes substantially more power. I think I get an hour off the single battery at the 5L setting. There are numerous others, some with up to 6L, and some with a continuous flow (lower LPM) option. The ads aren’t very helpful, but I have seen a comparison chart.
https://www.portableoxygensolutions.com/portable-oxygen-concentrator-comparison-guide/
The GS-100 runs on AC and is strictly a stationary device.
Does this answer?
Regards, daryl
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Hello Steve ( @steve-dragoo )
I tried to reply via email earlier, but it was rejected by the server. Now I know better.
I have hypersensitivity pneaumonitus (can’t get air in) not IPF, so the details of my experience may not apply. Also, I tend to be more “liberal” in my approach to acquiring PoCs. I have a tech background, and my understanding of these appliances gives me confidence in making purchases on my own. However, each person should follow their own instincts, and some may think me to be a bit reckless. Clearly, the most conservative and prudent approach is to leave the choice and acquisition of these devices to the professionals.I was tested a year ago, when I was using 2L/3L (rest/exertion) and my doc approved me for no additional oxygen in flight. I haven’t flown yet, but when I do, I will get the airline form and have my doctor certify my status. That said, although I’m “liberal” on acquisition, I’m very conservative in planning and execution. While I might not need oxygen on the plane, I envision situations where I must rush through the airport, carry bags, stand in long lines in hot rooms, etc. For this reason, I plan to carry a PoC with the required batteries for the flight, as well as AC and 12VDC chargers for airport layovers.
I did do a considerable amount of high plateau (5,000′) and mountain (12,000′) driving. I had no problem driving, but my wife made me stay on 2L, just in case. I think that airline cabins are pressurized to 8,000′. I’d recommend getting tested, since, once you’re up there, the airline might not be able to help. They put me in a chamber in the hospital and took some measurements. It took 15 minutes.: I’ve since “graduated” to 6L, with moderate exertion (walking), however, my needs vary widely. At near-total rest (driving or sitting in a chair) I can maintain 90% reliabily. However, as soon as I get up, say to go to the bathroom, I shoot up past 5L to keep above 90%. I believe that an increase in requirements could happen at any time, so I preparing for the next one. Since I still like to dabble in tech, this is actually a good outlet for me.
Best of luck on your trip.
daryl
