I have PF

I would like to share a little about my experiences with Pulmonary Fibrosis (PF).
You will be told that lung transplant is the only treatment. I have discussed transplant briefly with my doctor in Arizona recently I have moved to the New England area and am in the process of setting up with a new doctor.. After looking at my options for transplant I don't think it would work for me. I am 56 and over weight so to make the list I would have to lose enough weight. A little about the list for those who don't know, when you make the list you are given a number, the number takes into account such things as weight, age, general health and your ability to pay for what the insurance won't. With my breathing difficulties it is very hard to do enough to lose the weight. Most likely take about 2 years. Assuming I am still alive, I would now have to stay with in 2 hours of the hospital performing the transplant. Meaning no real vacations, which is one of the things I enjoy. It can take a year or more to receive a transplant if you are lucky. Also do you realize that over half the people who get lung transplants die within 5 years. The lungs are the only organ that after transplant is still exposed to outside elements, because of breathing so they don't last. You have to take immunosuppressants so your body won't reject the lung (in most transplants you only get one). Meaning you must avoid going out because you might get exposed to something. The immunosuppressants have side effects so you will be on more pills for those as well. My past experience is that other than tylenol I seem to have bad reactions to most drugs. Nausea and diarrhea is what I usually get.
Doctors suggest lung transplants because they don't know what else to do, there really aren't any good treatments. They even recommend transplants for cystic fibrosis patients even though it will extend their lives only by a year or 2. Most CF patients would only live a year or 2 without the operation so why put them through all that? After all this is a major operation you will be in critical care for 2 weeks or more after the operation. When I weighed the pros and cons it's just not the kind of life I want. Don't want to put anyone down if the operation looks like it will work for you then do it.
As near as I can figure I first started getting sick with this when I was 26. Was working at an injection mold (plastics) factory and was exposed open hoppers from which the stuff would rain down on me. When I started to get ill I was misdiagnosed with rheumatoid arthritis. My research shows that this is not uncommon. At least it got me out of the factory.
It took nearly 30 years for a doctor to figure out what was wrong. During that time I would just get very sick 2 or 3 times a year with bronchitis and I would tire easily. Despite that I married raised 2 children, held a job and took care of my household. All of which I loved doing. So I think I've had a pretty good run, each day now is a blessing. My concern is that other people with this disease will be treated in much the same way I was. Which is given little or no information on how to take care of themselves and their equipment. It can be pretty scary when you are left alone with strange equipment and you don't know what to do.
Most people with PF die within 5 years of being diagnosed. I have come to believe that many of these deaths are due to improper maintenance of the oxygen equipment. I know how much I used to cough because my filters were dirty and don't get me started on the time I tried to clean my tubing. So I educated myself by going online and gathering all the information I could. I am willing to share what I know or just give an understanding ear if someone just wants to vent.
Things I do recommend
1 get some kind of portable oxygen, while I highly recommend a portable oxygen compressor because you can stay out longer, if all you can get are tanks get them and use them.
2 don't stay inside all the time get out even if it is just to go shopping. I like taking my dogs out to the dog park they get to run (I live in an apartment) and I can walk at my own speed.
3 exercise, you will feel better I have a gym attached to the laundry where I live so everytime I wash clothes 2 or 3 times a week I hit the gym. I don't set any records but I use the treadmill at a speed I can handle for 30 minutes. Then its time to move the clothes to the dryer. Now its time to lift weights, 20 reps 5 different exercises.
4 if possible stay with family if not look for ways to be with other people. Spending time with others will help with everything.
That's all I have for now. 

Thanks for all the good information you share in your post. You have a tough road to travel but it's clear that you approach life with a positive attitude, which is so important. I hope and pray that you are able to maintain your baseline health for many years to come. :pixie:

I plan on doing just that. One thing I did for myself was to splurge and buy a DVC membership so now I have to go to the world at least once a year:mickey:

Thanks for sharing your experience. It sounds like you have thought it through and are doing what is best for you and your situation.

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Originally Posted by Mrs Bus Driver

You have to take immunosuppressants so your body won't reject the lung (in most transplants you only get one). Meaning you must avoid going out because you might get exposed to something. The immunosuppressants have side effects so you will be on more pills for those as well. My past experience is that other than tylenol I seem to have bad reactions to most drugs. Nausea and diarrhea is what I usually get. 

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I'm not sure who told you that because you are on the immunosuppressants to prevent rejection you had to avoid going out. My mother has a transplant (kidney) and takes immunosuppressants and steroids to prevent organ rejection. She is able to travel up to visit us without issue (she lives 1000 miles from my sister and I) and has the full support of her medical staff. She doesn't travel overseas or cross country, but that has to do with her mobility issues and not the transplant.

Thank you for sharing your experience and the information. Enjoy the DVC. Good luck to you.:pixie::pixie::pixie:

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Originally Posted by Hammer

I'm not sure who told you that because you are on the immunosuppressants to prevent rejection you had to avoid going out. My mother has a transplant (kidney) and takes immunosuppressants and steroids to prevent organ rejection. She is able to travel up to visit us without issue (she lives 1000 miles from my sister and I) and has the full support of her medical staff. She doesn't travel overseas or cross country, but that has to do with her mobility issues and not the transplant.

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I am glad your Mother is doing well. Kidney transplants are almost routine these days. I know it is still a major surgery but is not the same as a lung transplant. At 3 years out Kidney Transplant survival rates are around 90%, for the lung its around 60%, at 5 years its under 50%. The lungs are exposed with every breath you take. Whatever is in the air that is what is going into my lungs. So even now I must be careful. If my immune system were suppressed I would have to be even more careful. It all comes down to weighing the pros and cons, seeing if it is worth the effort.
Immunosuppressants do just what then name says suppress the immune system. Meaning you are less able to fight infection. When I get a cold or flu doctors want to put me on antibiotics immediately whether they will help or not. I have to be very careful with antibiotics, some I am allergic to and 2 years ago I spent 5 days in the hospital because the antibiotic I was on destroyed the lining of my intestine.
This is a Quote from Brown University website on immunosuppressants:

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SIDE EFFECTS
It is obvious from the table below that there are numerous side effects associated with immunosuppressant drugs. Among the most significant of these side effects are opportunistic infections and transplant-related malignancies. Many of these side effects are due in part to the weakened immune system of transplant recipients. Because of the high amount of redundancy in immune cells, immunosuppressants, which aim to decrease immunologic rejection of the transplant, inadvertently handicap the ability of the immune system as a whole. The immune system therefore has a decreased capacity to protect the individual from microorganisms and cancerous cells. Other side effects are caused by unintended drug interactions with the body. These side effects make immunosuppression difficult for the patient, and significantly affect quality of life, as immunosuppressant therapy is often life-long.

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There is also a long list of the side effects which I won't post here. We all have our own problems I don't consider mine worse then anyone else's. Just wanted to share a little of what I've been through.

Pets are great for companionship. When I feel tired and low, because I did to much the day before or just to much moisture in the air my boys are able to cheer me up. Ritz the cat will jump on my lap and bump me with his head until he gets all the attention he wants. His big brothers (the dogs they raised Ritz from a kitten) Pharaoh and Sully know how to give me the look, you know the one. Then Sully will grab the tennis ball or his favorite kong toy and its time to play. Even on days when I don't feel good I can still play with my boys. But the pet hair dust and dander can really make me cough. It helps to have a good vacuum and use it. I have washable filters for mine which I found on Amazon for $5 each. When cleaning the vacuum or litter box I wear a mask to cover my nose and mouth.

When you are on oxygen you learn to pay attention to the numbers. First there is your oxygen/heart rate monitor. A 99 oxygen, heart 70 reading is great but I most likely am not doing much. Go for a walk on flat ground, after a few minutes 95 oxygen, heart 90 to 100 not to bad. Go uphill now I'm at 90 oxygen heart 100 to 105 and looking for a place to sit or at least stop while I wait for my oxygen to go back up. Going up the the stairs of my apartment can have me down to 85 enough to make me stop and catch my breath. All the while I am on oxygen, without the oxygen I can't even go for more then a few feet on flat ground before my oxygen levels drop to 85. I have a large compressor at home, that sits in the middle of my living room with enough tubing to allow me to get to each room. I usually keep it on 3 but on days of high humidity or when I do a lot of housework I turn it up to 4. I have a portable oxygen compressor for when I go out. Some differences between the room compressor and the portable that I should mention. The room compressor is a continual flow, meaning the oxygen is always flowing through the lines. The portable is a pulse model meaning it activates, works when I breath in. You can get continual flow in a portable but it costs more also portables usually only go up to 3 on flow. The number on the continual flow refers to liters per hour. On the pulse models it doesn't work exactly the same. Because you activate by breathing in you only get flow as you breath. This helps to conserve the battery. However if you are breathing rapidly (such as running or hyperventilating) it won't give you as much as continual flow, you will get less oxygen per breath until your breathing slows back down. A pulse flow can't produce as much oxygen per hour as a continual flow but it can produce enough for me to do most things. Pulse flow compressors are lighter and smaller, the one I have can be worn over the shoulder. Portable continuous flow are larger and on wheels, think carry on luggage. BTW most portables are made to use on planes but check with your airline before you go to the airport, you will need a note from your doctor to bring it on the plane. If you have a pulse conservator attached to an oxygen tank it works in much the same way and will help make the tank last longer however there are places where you can't go with a tank, airplanes and theme parks are 2 that come to mind. The selling point for pulse is that it makes your oxygen/batteries last longer. In order to use the pulse flow you have to be able to breath strongly enough for the pulse to work. I am lucky that I can use pulse flow many are not able to do so. Your doctor will do tests to determine what will work for you.