Our goal is to help find a solution for those that need to be able to use their Porta-Lung (iron lung) without assistance.

page updated 1-25-2009 this is a 'living page' as it is updated often.

Feb 18, 2005 
I have come to the conclusion that there is not enough help for the Porta Lung users. Also the need for just such a group of users for a discussion group is needed to get some issues resolved for the Porta-lung user.

This site page is best read from the bottom to the top as the oldest entries or toward the bottom.

pictured above is an unmodified Porta-Lung also known as the new iron lung

There are many clinically accepted medical conditions that require negative pressure ventilation such as, for example, central Chronic Hypoventilation Syndrome, Muscular Dystrophy, Spinal Muscular Atrophy, Post-Polio Muscular Atrophy, Non-Obstructive Sleep Apnea, and Restrictive Lung Disease Associated with Kyphoscoliosis.

2007-03-08 Just talked to Dano: The plans have been sent and reviewed by Dano and some of his people that are 'in the know' and it is being viewed for ways that it can be incorporated into the 'model porta-lung' for the users of today.

The name has been changed but the machines do the same work and look much the same. The machines now are just much lighter in weight with very little difference in the design. Children use these porta-lungs now for different causes of illness such as sleep apnea and scoliosis just to name a few.

as either positive or negative pressure. These pressures when toggled back and forth cause the person inside the porta-lung to breath in and exhale out. Some people "forget to breath" while sleeping at night and these porta-lungs allow them to sleep deeper than with using the positive pressure mask systems. Also some of the people that use these systems can not get by with just the positive system as they need to expel the carbon levels from their

 The mask systems are highly unconformable for sleeping as I have witnessed with my own daughter. The Porta-lung system is much less restrictive with the latches installed. The mask systems don't stay firmly on the face and fall off a lot. Most people don't care to sleep with something on their face and the mask systems are hard to fit to the right size as well.

2007-01-24: According to Respironics:" Invasive Ventilation – ventilator generated breath is delivered to patient through an artificial airway positioned in the patient’s trachea (e.g., tracheostomy tube).

2007-01-20: from Dano at Port-Lung

"...Thank you for your continued support of our negative pressure technology.

Unfortunately, we are not currently in a position to pursue any changes to our product. Every change has to go through an FDA approval process which is expensive and time consuming..."

2007-01-22: Just got off the phone with Dano, he is going to sign a waver so that I can send my latch designs to him so that we can both be on the 'same page'.

2007-01-24: One thing that I have forgotten to mention is the insurance companies, with out the latch system in place they or the patient must pay extra fees including the cost of an aide assisting the patient on an extended period of time. Both the patient and the insurance company can stand to benefit from these latch systems.

For more information about the Porta-Lung see Respironics pages on them at http://portalung.respironics.com/ or go to Porta-Lung at: http://portalung.com

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 This just in from Dano at Porta-lung on 2007-01-12 quote: "...I like to discuss a joint effort to promote our most important reason why we continue to keep alive the concept of negative pressure ventilation and that is the Porta-Lung user. I hope to be linked to your sight and look forward to further communication..." There is your link Dano.

     Also on the same note that we need to keep the Porta-lung alive is this e-mail that I received on March 11-2006 from Matt:"... I am a paramedic from Louisiana currently studying disaster response solutions for mass casualty respiratory care.

    I told Matt more about my latch design, it was not exactly what he wanted to hear. I told him that the best way to prepare for such a disaster is to have the "Porta-lungs" and NEV's already to go in mass quantities which at this point they are not even close to doing.

2007-01-09: After only seeing the pictures of the modifications that I made to the Porta-lung and writing up and sending in the patent information this is what the lawyer wrote for the patent. And as you can see just from the description, if I were to show anyone the pictures then anyone could do the changes as well. This is why I must insist on them to sign the agreement of confidentiality agreement.

“...[0016] From the foregoing disclosure and detailed description of certain preferred embodiments, it is apparent that the patient can operate the illustrated ventilating chamber with little or no assistance from another person. Once in the chamber, the patient can easily pull the door closed by grasping and pulling on the handle because the door is supported by the door support assembly. With the door closed, the patient can operate the actuating handle to pivot the door latches to the locking position to secure the door. The patient can then adjust the neck yoke to its desired position by pivoting the neck yoke actuating handle. Once the neck yoke is adjusted, the patient can lock the neck yoke by pivoting the neck yoke locking handles.
 

With the chamber secured and closed in this manner, the patient can initiate the ventilator by activating the operating switch. It is noted that with the retrofitted chamber disclosed in detail above, the ventilator sometimes alarms when turned on by the internal switch due to low pressure during initial start up. Thus the patient may need assistance by another person to turn off the alarm. It is believed that the electrical assembly can be modified to prevent this alarm condition and/or an internal switch or wireless remote can be provided so that the patient can turn off the alarm under these conditions. To exit the chamber the procedure is reversed. It is noted that if the ventilator alarm sounds upon exiting the chamber, the patient can allow the alarm to continue until they are fully out of the chamber and can shut-off the alarm.

07-14-2006

1) Males are least likely to get scoliosis. 2) Most curves never reach 40º. But doctors will recommend the brace or some other treatment to try to keep it from increasing. 

The doctors tell me that a 40º curve is acute and an 80º curve is life threatening. One reason that a person with scoliosis could need to use the porta-lung is that when the spine curves the rib cage is also effected in that it crushes the lungs and other organs. This causes hard breathing and exhaling. When you combine this with apnea while sleeping the person will then not breath properly and their carbon dioxide levels may increase causing these levels to be elevated beyond the norm to the point that one could die. Thus the use of the porta-lung comes into play to keep the carbon levels down to a more normal range. With the use of a porta-lung the person can live a more normal life.

 Most doctors I am told will not do surgery on a person till the curve reaches 40º and then they usually will want to check the spine at the base of the skull to be sure that surgery is not needed there prior to the rod surgery. This is to prevent further damage by the insertion of the rods.4

06-012-2006  

A question was posed to me without an e-mail address to reply to. The question: "why does the head need to be outside the machine"... answer: The Iron lung or in this case porta-lung  with the NEV100 acts like your lungs. It causes, by removing the pressure inside or by creating more pressure, the person inside to  breathe in and out. The person inside needs to receive new oxygen and expel old carbon dioxide on each breath taken. Hence the head must be outside of the chamber in order to do so. In other terms the porta-lung and NEV100 take the place of your lungs and thinking in order to force your lungs to gather oxygen and to expel carbon dioxide.

The NEV100  is the electronic machine that acts in the manor of a "vacuum" in that it sucks air out, forcing the user to breath in oxygen. Then it acts like a "pressure chamber" by forcing air into the porta-lung, there-by forcing the user to exhale carbon dioxide. The porta-lung or 'iron lung' is the chamber or 'user's body' that surrounds the body much like the chest walls of a person. It then repeats the process much like our lungs, over and over again.4

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07-10-2006

As of this date in time I have heard nothing more from either Porta-Lung Co. or Respironics. As such I can only conclude that they will not endeavor to add any such devices to their product line. As this is the case I feel that there is only one or two ways in which this system will ever be viable for the public in general. 

The first is if I were to go ahead and make the system. This is not an option that I can afford to do as just one of the parts for 'the fix 'cost me $120.00 each  and 'the fix 'needed 3 of them. 

The second is to have any one out there that uses a porta-lung and that needs to have the system design is to have them design a unique system for their own use. This is the way in which I must focus toward.   

If you are one such person in need of 'the fix'  please contact me via email at the bottom. If you just wish to help others in this cause you can help with a small donation. You can do so at the bottom of this page on a secure site. The third option is to not show it to anyone at all. 4   

Are your carbon levels high at morning wake-up time?

update 5-26-2006 This in from Porta-Lung

Sleeping with a mask and find it too uncomfortable and still not sleeping well?

The Porta-lung with the latch system might be your answer. To find out read on.

Please let them know how you feel in this matter. It might help. 4

2-16-2006 - News Flash just in

 I just got the word from a contact 'down under' in Australia that quote:

"Good to hear form you. Yes we finally got our custom made portalung. However saying this Respironics are no longer selling the NEV 100 UNIT outside of the US . This will be very interesting here to our Portalung users."

What does this do for the kids that use them here in the states if they decide not to continue the NEV 100 in their line of products?4

A Porta-lung equipped with this design that I have created, or one similar, I feel could be used for the persons that now use the 'face masks' with undesirable results, or uncomfortable sleeping. With these porta lungs you can turn on your side and back. The mask's I am told is hard to sleep with. I have just found Porta Lung's new URL at portalung.com NOT at porta-lung.com but I am still not sure what is going on with the company. Maybe you can ask them for more information?4

This tells me that no one cares if this design ever goes into place or not. So I guess at this point I might as well design it for my daughter and let the rest of the

 users of these lungs 'fend for themselves'. I can ill afford the cost of patent and manufacture let alone the insurance so I figure that the design could die here.

The pro's version of the modifications were not total to the liking of my daughter. As such we have to redesign the pro's version. As she put it "it's a nice design, but he did not try it". 

I suppose that each lung will or might need to be done on an one-on-one basis with the person using it in mind.

I also figure that Porta-Lung (the folks that could benefit the most - and all they needed to do was sign a liability release) will probably never get the designs to make these systems. Looks like they will have to design a system of their own. I would look for that new system about the year 2060, maybe. 4

Iron Lung's New Age Underground! 

Porta-lungs are what they are called today. But they are the same devices of yesterday. Their music is the same as 

 the past. They wheeze, hiss, moan and groan just like the old iron lungs of the past. There is not as many around as before but they are still here. The lungs for the kids of today are not for the polio era but other modern illnesses. Just recently a new one was to be shipped abroad.

Most kids of today have never seen the inside of one. And I hope that they never have to see one. But those that have, they want others to understand that sleeping in a regular bed to them is not an option.

So next time some one ask you about the iron lung or the ‘new age Porta-lung’ you can be better informed. Tell them it makes a different kind of music! It’s the music of life!4
 

There are some people who are mobile and need to use a Porta-Lung at night or at different times of the day but do not need the use of it 24 hours a day. These are the people that could be helped with the latches and neck yoke described below. These are the people that this site is directed toward.

The "fix" is a system so designed to allow an active and mobile person to get into and out of a noninvasive Porta-Lung with out very much if any assistance. "To be able to do by oneself or to have independence."

Below is what I have done so far for the person (s) that don't need the Porta-Lung all the time and want to get in/out on their own accord.

2003

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 ...............................

update on what I have done so far:

I guess it is time for another update on the lung. It is now Jan, 22-2006 and still no word form Porta-lung about the changes needed. I know now that they will not be doing much about the needs mentioned here. Dano at Porta-lung (last time we e-mailed) said he was still working on this but that was well over 7 months ago. Guess he is not working too hard on it.

The 2nd lung is now here and I need to get the final touches done on it to make it work. I like the way that the 'pro' did the latches but the neck yoke design will not work. 

We have found some problems with it in respect to the pro's design of the neck yoke,

  "cramping" of the compartment. This will never work and will need to be changed. I will need to use some of my own fix to better make this unit work. The neck yoke area just does not give her enough room to move. 4

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Coping with the "Lung" a parent's point of view

Oct.  2002:

Beepppppppppppp...

  My turn, as I fumble out of bed and into the room heading to the door and down the hallway. I reach her room and look at the numbers, all red and 0's. Looking into the Porta-lung I see the probe has come off her finger again. Shutting off the ventilator and the pulse oximeter I prepare to open the chamber up and reattach the probe to her finger. I re-close the chamber and turn the machines back on and wait for the numbers to come back up to normal. I head back to my room and glance at the clock, 3:35am. 

  Back in my room I sit listening to the "gurr-lunk" and "wheeze" of the "iron lung" in my daughter's room on the monitor. I wonder if the alarms are going to go off and wake us up on this night again. I wonder how many other parents have to deal every night with one of these machines. I know there is not many in this area that are in use, as almost everyone in the hospital had not ever seen one. I climb back into bed to try to sleep. 

  What does a parent say to a 15 year old child that does not want to go to sleep at night because she doesn't want to go into the "machine". She has known the freedom of sleeping in a real bed most of her life. She hates the lung, I don't blame her as she can not at present get into or out from with out help. She only needs the machine at night when she sleeps. But without it, over a period of time, her system holds too much carbon dioxide which is not good for her. 

  I want to be able to say to her that every thing will be OK but I honestly can't. I would like to tell her to go play like other children but she can't. She has to carry the external oxygen pack on her back in school. She tells me that she is almost getting used to the stares that she gets from other people.

  But now I guess I am getting ahead of myself. She was told that she has Scoliosis at the age of 12. and by the time that we were able to get her rods placed  

in her back it was at a 78 degree curve. They tell me that a 40 degree is considered acute 80 is life threatening. When she was in the hospital getting the rods put in we almost lost her in the surgery. Now they tell us that her breathing is not right at night and that she forgets to breath for periods of time at night. We tried many methods to have her sleep with at night but the Porta-lung was the only method that kept her carbon levels down and allowed all of us to sleep most of the night.

  Trying to redesign this lung to allow her to be able to get in and out of by herself is almost out of the question due to the fact that it is not ours. The insurance co. rents the machine and due to that I cannot redesign it for this purpose. Being that she is 15 years old and goes to high school on a daily basis this leads one to wonder how she is going to spend the rest of her life using this iron lung as she needs some one to see to it that she is properly set up in it at night to be able to sleep.

  Vacations and weekend trips to my dad's are now out of the question for her due to the Porta-lung unless I go to the expense of buying a mobile camper of some sort that I could put the lung into for the duration. But as of now I have no such means to transport the Porta-lung...........
                     **********
  It has been almost 5 months since I wrote the notes above and several things have changed. We have taken an over night trip to Dad's house but with out the lung as she can go for short times without it, however that proved to her that she needs the iron lung and has since resolved to the fact that it is a fact of life now to use it.

   We have also limited the number of "monitors" that we use at night now due to the fact that when she is in the lung she has to breath as the lung is working so we have limited the monitors to those that make sure the machine is working and the monitor in case she wants to say anything to us. After that we can now sleep much better most nights unless the lung quits or needs looked after in the middle of the night for what ever reason

  We have been told that we can "take the lung" on vacation if we ever go on one now, but how is the question now as it is the size of a single bed.

  Maybe some day I be able to "finish" this on a "Happily Ever After" note but for now this will just have to do. 

  So I" tell her, Good night... the bed bugs can't bite... they can't get in.
                     **********
   While I had a stay in a hospital I decided once or "if" I got out I had to do something.

  It is now 3 years later, she is 18 and has been using the Porta-Lung this whole time but changes have been made. I found out that the insurance co. said that the machine was mine. She wanted to go to college and the insurance co. did not want to pay for an "aid" for the years of college so they have gotten us a second Porta-Lung so that I might redesign it. Now I have redesigned it and she can now get into with little assistance and out of the Porta-Lung with no assistance. 

  We are trying to get an engineer to do the modification "professionally" and when I told her this she wanted to be sure that the one I had modified was NOT the one to be sent off to be done. The Porta-Lung that I did modified she has now been using for 15 months. Now the Porta-Lung people want to know how they can do the same to other machines. They have told me that after 18 years in business they were unable to figure out how to do this! It took me just 2 months once I got going past the "paper work".

Update: The engineer brought back the 2nd Porta-lung and the modification is totally different. This proves to me that these machines could and should have been designed a long time ago for these people. But more importantly that they can be re- designed "on site" very easily by the users. This may be the only real solution to this problem. And keeping the pulse on our update comes the most recent news from Porta-Lung about using this or any other latch system as being.......  !  

  as of  Jan., 22 th 2006......."      "........

Enough said on their update. 

dad 4

This is how the Porta-Lung looked when we picked it up at the hospital. >

< This view shows the door latch system, notice that a person inside the Porta-lung can not reach it to open or close it. (They also can't scratch their nose when using the lung). 

What I have not shown is any of the designs that I have done due to the patent pending on the system.

The invasive respiration method is just that, invasive and also comes with complications more often. So some of the people opt to use noninvasive methods. The Mask method is too uncomfortable for some people to use. Some of those who wish to use the noninvasive Porta-lung  also live everyday normal lives and have the need, desire and wants of being able to get out of bed in the morning. Due to my daughter in need of this type of a system, the "fix" was up to me to make it happen. That brings me to here and now, to try to get the "fix" in the "works". 

update: 5-06-2005 attn. has filed papers for patent application

other related links Scoliosis Association of Australia

 So now is the time to 'GET-ER-DONE' 4

update: 5-19-2005 It is now a patent pending product ! Porta-Lung has been sent a non-disclosure agreement  to be signed by them.

Please include your e-mail address if you want a reply!

01-22-06 still no word from Porta-Lung ! Do they care about their products or are they stalling to get my design free?

If you wish to help others in their cause to get 'this fix' you can do so with a small donation, (not tax-deductible) to the scoliosis fund below.

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