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Starting Esbriet
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Hi Paula,
I know I said I would let you know how I had made out with my doctors’ appointment, but I’ve just been letting things slide a little. I had posted to you about my hospital stay and I wrote a post to Charlene today and told her about my doctor’s visits, so I won’t repost all of that all over again, so you could read that post if you want to. I don’t want to fill up the full forum with just the same thing over and over. I’m lazy I guess?
I just got all my old pending things caught up and read some more on how things were going with you. WOW! Your doctors visit sure turned out different than mine.
It does seem from some of your posts that you were really under a lot of stress about your new home change along with just putting up with IPF on top of it. I hope now that you have relocated and things have started to ease up a little for you?
Some of the results of your other tests don’t sound like they turned out very good for you. I’m sorry you had to go on oxygen pretty much full time now but maybe it will diminish some of your other problems you were having. I guess with IPF it is inevitable and it will be required for all of us with IPF in time. So far, I have been lucky (knock on wood) that my 02 level hasn’t dropped although I haven’t taken any stress tests to see if it changes. The only visual test they gave me was checking my 02 finger level test and said that they checked my level while they had me talking and it hadn’t dropped. I don’t know what that proves. It seems like they would try to stress me a little more than that. I know my endurance level is way down. I seem to have to stay sitting a lot of the time and can’t walk far without having to sit down.
You said you were coughing a lot though. I know I related in a previous post what happened that stopped my coughing but since I have started taking NORCO Hydrocodone 5/375 again, I have almost never coughed again other than what is caused from my sinuses draining. No more dry cough. It’s possible it was from the Codeine that is it that worked, I don’t know. That’s just my story and I’m sticking to it.
Good luck with the prednisone. They tried to give me that quite some time ago and I could not tolerate it. I think they said that I had been able to take it long enough before I had trouble with it that if it hadn’t worked by then, to just discontinue it.
I see your area got hit a little by the remnants of the hurricane and caused some flooding in some locations. Did it affect you? We are finally getting some cooler weather now and it has cleared out most of the smoke. It got down to almost freezing last night and it is in the low 70s in the day time. Most of the smoke is being shunted to the north part of the state. Also, they are starting to get a few of the fires controlled or out.
Let me know how things are gong with you and how you like your new house, etc.
Ray
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Hi Ray
Yes I read your comments to Charlene, the hospital doctor and Dietitian were whacked.Some times when I go to my doctor he just does the thing on my finger to get my O2 levels other times we go for the walk of shame as I call it. Usually when I get in the exam room my level is around 87 and then quickly goes up to 93+. Not this time.
O2 arrived on Wed. I was doing ok until I saw what they brought to me for the portable (yes it was a temporary one BUT). Lets just say I was using some language that I can not write here. lol. I then sat at the kitchen table and started to cry. My daughter was there and asked if I wanted a hug. Which I did. She said a lot of soothing things and reassured me I was not alone. Then she commented on how soft I was. I told her it was the Downy. She laughed and said “not your clothes silly, your skin is so soft”
The next day I was tested for and approved for the concentrator portable. They gave me a loaner until mine come in about 3 weeks. I have been out several times and I am ok with it. What I have seen is when ever I test my levels I am in the high 90s. Have not seen those in quite some time.
I will be off of the news meds he gave me by next weekend. Phew. Seriously hoping that the fat fairy has not been sniffing around.
We are doing a CAT scan in Nov. I said to the doctor that way we can see if the fibrosis has increased. He said yes, but the numbers he has gotten from the function test has told him that it has gotten worse. He asked me if the OFEV was working like the Esbriet seemed to do. I told him I could not honestly answer that as when I started taking it, was when the the stress of selling/buying hit and I thought that the stress really did a number on my lungs. He agreed. Once the CAT is done, I will see him the beginning of Dec? and then we will make an appointment up at the Mass General Hospital to see the doctor whom my doctor has been in close contact with and keeps him up to date.
You ask about the stress. In some ways it has gone down, but we have been so busy doing the stuff to the house that it has been a constant non stop around here. Plus I have been helping my daughter with the kids. Busy busy busy.
Right or wrong I have started implementing stuff for when its necessary. I told my husband that if need be, to not put me in a nursing home. I want to stay here have hospice come in and aids to help me with what needs to be done. I actually had him put up pictures in my room of my father, grandmother and as soon as I find a good picture of my mom, I will enlarge it and put it up there. I guess I want to feel closer to them. If that makes any sense.
We did not really get hit too bad up here storm wise. Glad the temps finally dropped. My friends in NC got slammed but they are ok. Thank you for asking.
Well time to get dinner cooking.
Paula
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LOL Paula, I love your response: “the doctor and dietician were whacked” … that made me laugh out loud, and I am so glad you said it, as I was thinking it. Hopefully it gave Ray a laugh too! Laughter is the best medicine 🙂
Do either of you have pulmonary function tests done regularly to check things like your FEV, FEV1 rates, etc? This should give you a baseline between appointments of how well your lungs are working. I have them done every 3-4 months so we can cross-reference the decline (unfortunately in my case) over a set period of time. The pulse ox readings are important of course, but so are the physiological tests of your lungs like PFTs, 6-minute walk tests, etc.
I hope you’re having a nice weekend Paula, and truly hope the weather there is as gorgeous as it is here today. I am just about to go sit outside and enjoy the cooler temps and beautiful sunshine!
Take care and speak with you soon,
Charlene.
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Hi Ray,
Thanks so much for your reply, it is nice to hear from you and hope that you’re doing a little bit better. No worries at all about any delay in responding to me – I always know you’ll connect when you can 🙂
Sorry to hear about the mishap with the roving doctor, as if you needed to deal with that on top of everything else! Sounds like a bit of a nut, and while he may have tried his best, it is so hard for patients like us who know that in general there is a lack of understanding/knowledge about IPF even among specialists, so it’s hard to accept that a “drop in/out” or covering doctor would know how best to treat us. Glad you could end up seeing your own pulmonary doctor in the end for better advice. Sorry again that was your experience, how frustrating for you all.
So right now you’re waiting for 30 days for the ulcer to heal before you start back on the Esbriet, and you will do that after you see the doctor in October? How do you feel about that plan? I know healing needs to take place, I can understand that, but are you nervous about starting the Esbriet up again? I hope the building up to the ideal dosage again works out alright for you and that you don’t experience the tough side effects again. I’ll keep my fingers crossed!
Sounds like the doctor is onto something about adding a protein shake to increase the calories you consume, and I do agree that the Costco shakes are pretty good. The only thing I caution with those is checking the sugar content as I always compare how much sugar is in a shake before I buy them. I think the protein power from Costco is pretty good though, as are the protein bars (Kirkland brand). I love them! They come in a back of 20: 10 chocolate chip and 10 brownie, and each only has 1gram of sugar which I appreciate. Let me know how you make out with this, hopefully it works alright for you.
Thanks so much for your kind words about Nova Scotia. Every moment out there was something I will cherish, and I still get quite teary-eyed telling friends and family about it because I loved every moment. The sightseeing was great, but I think my favourite moments was the quality time with friends I spent out there: driving in the car singing along to music with the kids, or laughing at inside jokes, or telling stories about our lives before we met. They are pretty special, and it made it so far to say farewell and come back to a life that I’m not convinced is for me anymore. Where I live seems to value work more than family time, and I live in a chaotic city doing a job that I’m passionate about, but could be more inspired by. I am really mulling over what to do about this. I don’t think I can up and re-root my life to the east coast, or could I? Not sure, I’ve been giving it a lot of thought and wondering why I don’t live somewhere that I know would make me happy, ie. by the ocean. I am having coffee with a friend this afternoon to discuss this more, as I know she will be blunt with me and help me consider all my options before deciding what do to about this feeling of just wanting to be in Nova Scotia. Sorry that turned into a novel, but in summary: yes my trip was absolutely incredible! 🙂
Take care Ray and I look forward to hearing back from you when you’re feeling upto it.
Charlene. -
Hi Paula,
I’m not sure which part of the 02 items you said you got on Wed that you were upset about? Did you mean the regular O2 machine that generates O2 that you use while in the house with the long tube line that you must drag thru the hose and use at night, or the portable one that you can carry when not on the O2 generator type? I know that there are a lot of different types of portable O2 units you can purchase. I hope you can get one that you like.
I have seen a lot of people around that I see locally when I go out that are using a portable. That looks more convenient than having to pull/push the tank in cart. I guess some people need more O2 than a portable unit can provide and have to use the bottle in a cart unit. I only once had to use O2 24/7 for a month when I returned from surgery a year ago Oct and that was a lot of hassle and I hated it. I didn’t get to try the portable unit though and no longer need it yet. I am happy to hear that while you are on the O2 unit, your O2 level stays up over the 90 reading that you need. I’m sure, if nothing else, it will help you both in feeling better and ease your mind about having to worry about the level dropping down too low.
That was funny about what your daughter said about you skin being soft and you saying it was the Downy. I wish my skin was soft. It is so dry and flakes all the time. Maybe I should try wearing Downey sheets some way?
I don’t know why you seem to worry about the fat fairy so much. From the picture you post, I don’t think you have much to worry about. I know my wife seems to always worry about her weight all the time and I sure don’t think it is necessary and it just causes a lot of extra stress. Weight seems to go up and down so why worry? I guess I’ve always been lucky all my life and haven’t had to worry about it and now, since I can’t eat much over a cup of food per day, I am being told I need to pickup a few pounds. I just don’t know how I can do it.
I hope your CAT scan in Nov turns out in your favor. Keep me posted on how it goes. I guess it is the only real way they can tell if things are really getting better or worse other than the function test giving them some alerts.
I have really questioned how anyone can tell if the OFEV or Esbriet is working or not as they say that it only increases the time that you have before the inevitable and doesn’t cure the disease. How do you predict how fast you are proceeding as it affects everyone at a different rate?
I’ll bet you are still under a lot of stress getting things done with the new house and kids do take some time to deal with. Does your daughter live quite close by? I know that when you are in a new house there are really a lot of things to get done to get it the way you want it. Is it a brand-new house or just one that needs some fixing up a little?
I would hate the thought of going into a nursing home too. I know, if nothing else, they are very expensive. We have thought about purchasing a new home that would be more usable if we were disabled and needed more handicapped amenities. We really love our house, location, and it has most everything we will ever need. It is too large for us now that the 5 kids have gone away but after living in it for 48 years, we just can’t see moving. If nothing else, we could hire someone to make the doors wider and build some ramps to get us into the house if needed or any other needed things. It is hard to find a house that already has that done and until the handicaps take issue, what do we need? Most of our house is on the ground level and the only thing we would ever have to go to the basement for is that all our laundry equipment. They have stair ride elevators that we could put in if we needed that. There are bedrooms and furnace and AC stuff there, but we could get help with that if we ever needed to. One of our daughters and family live in town not very far away and we can always call her. Most of our neighbors know us and have offered to help us out if we ever need anything.
I’m happy the storm didn’t hit you. That is another worry you had to put up with. I guess NC and some surrounding states did receive most of the damage.
I better close now and get some other things done.
Take care,
Ray
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Hey Charlene
I believe the pulmonary function tests have been like 2 times a year. I think. But from what he said, I think, is he sees each test numbers to gauge what is going on.
Glad you got a laugh out of my comment. Being PC is not one of my traits. lol
Kind of cool here today. I am currently making a bean/sausage soup for later.
Hope your enjoying the warmth and sunshine.
Paula
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Hi Paula,
Thanks for your reply, and hope you’ve had a good Monday! It was so cool here today too, only 10 degrees so it really feels like autumn. As sad as I am to see summer go, the cooler weather for my breathing is definitely easier and I am enjoying the breeze through my window at night. I enjoy being bundled up with a cool breeze coming in. How did your soup turn out? Sounds delicious! Maybe I’ll get out the slow-cooker this weekend and make some butternut squash soup. I always love that 🙂
Glad you clarified the function tests, and that he is using the numbers each visit as a baseline for you. That is good to hear, as I always gauge the progression of my lung disease based on those numbers too.
Chat soon and hope you’re having a nice start to your week.
Charlene.
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Hi Ray,
I was referring to the portable O2 with the cart which thankfully they took back the next day and left a smaller portable. This one has a piece of equipment that goes on to of the bigger machine that makes the oxygen to fill the tank. The portable ones that do not need to be filled like that should be here in about 3 weeks I think. The nurse said it weighs about 8 lbs. I asked about the smaller ones that they advertise, she said they no longer use those because they break so easily where as the newer ones they are using are pretty dependable. She was saying on the salesman purposely let the unit fall down a flight of stairs. She said everyone gasped and held their breaths. The salesman laughed and said I did that to show you how durable these are. It worked perfectly fine after the fall.
To get on the portable ones that you see people using that do not have tanks have to qualify for them. Well here they do. Your levels need to be below a certain number. The nurse told me the portables used to go up to 5 liters but not so much now. She said they are now either a 3 or 4 liter units. Anything over that you have to go to the tanks. Also if your on the portable air condensers that you need to plug in when your not using it to keep the battery charged, most of them have the pulse function which sends out puffs of air when you take a breath. On the one I currently have, if I am having a hard time, I can change it over to a constant flow. I was on oxygen last July after my biopsy for a week. I hated it. When I went back to the doctor I told her I did not need it anymore, she had me do the walk of shame without the oxygen and agreed to my not needing it.
Downy skin. Trust me my legs/feet are very dry. My forearms look the skin of a snake. Ewwwww. I can just envision your wife watching you rub your skin with Downy to make it softer. Don’t forget the other benefit, nothing will stick to you. lol.
Both of my kids now live less than 20 minutes from me. Before the move they were an hour away. Its nice to be able to see them like I have been able to do. My daughter just started a new job with the TSA so I get the youngest (8) off the school bus and on Tuesdays I take her to tumbling class. Keeps me on my toes and keeps me moving. Which as you know they want you to do.
How does one know if Esbriet/OFEV is working? Well for me, with the Esbriet it was pretty quick after I got on the full 9 pills a day. I wasn’t coughing as much and did not get the SOB as much. Unless I was attempting to talk while doing something else. My friends would always say “What are you doing? Your all out of breath” To which I would say something like, tying my shoes. I was feeling better. Then not quite 4 months in I developed the allergy. As I told my doctor I honestly can not tell him if the OFEV is working given all of the other stuff that was/is going on. Being on the O2 I see a difference. I am sleeping better at night. My toes (which are messed up due to nerve damage a few years ago) do not get as numb as they used to or as cold. Depending on what I am doing, I do still get SOB but………
Thank you for your kind words about my not looking like I have to worry about the fat fairy. That picture was taken back in the 90s. My daughter keeps telling me to get a new picture but I like it. Do you recognize who is in the picture with me?
I fully understand why you and your wife would prefer not to move, and it sounds like what you would have to do to it to make it easier for you would not be to hard to accomplish. If possible you could probably even move the laundry up to the main floor.
The stress on many things has come down some. Getting used to the O2 and trying to decide if I want to go back to volunteering with Hospice. I love doing it, so I probably will.
Well I need to go stir my soup.
I hope your feeling a little better. I often think of you and hope that things are going as well as can be expected.
Talk to you later
Paula-
Hi Paula,
I know your reply was to Ray, but I had a chuckle when you shared the story of the concentrator tumbling down the stairs! I know they’re durable, however, I didn’t know they were that durable 🙂 Do you know which portable concentrator you’ll get? I have the SimplyGo Respironics machine and I have no problems with it! The only complaint is how heavy it is, but I usually lug it around on a little trolley anyways. Mine does both pulse and continuos flow, and I use the tanks sometimes too. It definitely takes some time to get used to these, I hope you’re gentle with yourself in the process. I’ve been thinking of you and hoping that the adjustment to the home 02 is going alright…
Take care,
Charlene.
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Hi again Charlene,
By the way, what does “KEYMASTER” mean in your title?
I guess by this time of the day you are having coffee with some of your friends and enjoying their company? It’s a little after 1PM here and so I guess it is after 3PM there?
I don’t know how to feel about the Esbriet plan that the doctor will be putting me on. It seems like it will take forever before I ever reach full strength of the 9 pills per day. I am also not convinced he felt that the Esbriet caused the stomach ulcer even though he said he was going to start out slowly. I know it must have starting to get me sick because of the vomiting I had shortly before I got the bleeding ulcer. There was too much coincidence in that while I was on the 1 pill 3 times per day, I developed the vomiting sickness and just a couple of days after starting the 2 pills per day I got the bleeding ulcer. That really makes me wonder. I did get nauseated sometimes before I started the Esbriet, but I seemed to notice that it was a different kind of nausea that I was getting. Also, I seem to worry that again, I won’t know if going on the Esbriet that it just won’t open an ulcer again. Just stress I guess.
Thank you for the info on the COSTCO shakes. I know they might have a lot of sugar in them, but I will watch out for the sugar content. I will be paying mostly interest in the protein content if any. I know they have a Nestle Protein Breakfast powder. A dietitian a few years ago said she didn’t usually prescribe this but said I should purchase a lot of high calorie items such as milk shakes and hamburgers to build up weight. That didn’t sound right to me, but she was a dietitian.
I do know about the Kirkland brand protein bars. My wife purchases them sometimes. I usually get to maybe eat one once in a while, but she really likes them, and they are gone before I think of trying one again. I guess I should get a case of them next time. I do have a problem with chocolate causing me some upset though and she really craves it, so I don’t eat many of the chocolate chip ones. We also buy the 60 in a box Quaker Chewy Granola (30 chocolate chip and 30 peanut butter chocolate chip) bars from COSTCO. They keep a long time and I even forget they are there because I don’t even get hungry much anymore. I guess I have just weened myself off from getting hungry unless I concentrate on it or see something that stimulates my appetite to eat something. I’ll try to keep to the protein type because I must watch the fiber.
I am happy you got to go on your Nova Scotia trip and enjoy some socializing with some of your friends and their families there. There is nothing more stress relieving than being with friends and families. It always seems to end fast though especially when you are having fun. The days just seem to fly by and then it’s back to the old grind.
It’s always good to evaluate your life from time to time and decide if it is time for a change or not. Sometimes a change in your life style is really what you need to make life worthwhile. Working and doing the same thing day after day needs some adjusting. Before I retired, I changed jobs and job locations several times. Each time it seemed to give me and the family a new challenge and outlook on life. It was kind of hard on the kids because of the changing schools and friends but they always seemed to get new friends and still have memories of the other places they lived.
You mentioned moving closer to the Ocean as you really like that. Were you thinking about moving to Novia Scotia or maybe the US East costal area? You do say your mother lives close by. If you move a long way from her and the rest of your family, it is always hard to get use to, but things work out you still can visit with them occasionally. You say your Grandmother’s lake beach house is a nice place to go and you go there often. Missing that might be a little hard but people like to go other places too. I know we didn’t purchase a lake or camp condo because we would just have to go to the same location year after year and we like going other places to see new things even though in the long run it might cost more.
One of my sons just retired and purchase large 5th wheel camp trailer so they could travel around in comfort. It is long and with tip-outs it looks like a house inside with all the amenities. He is talking about spending his summers in Alaska, but his wife says she likes the comfort of their home and it close to her family. They do spend a few weeks in the West costal area camp sites and some other mountain or US Park locations, but they say that there are fewer camp sites that allow that big of a camper. They said where they do get a reservation the nightly prices have almost doubled since last year. Also, they must make reservations almost a year in advance to get a space. They went to Yellowstone Park a few weeks ago and they said that they had to make it 11 months in advance. Also, it is hard to predict what conditions might exist when their camp schedule is to start. Maybe one of them might be in the hospital or they have house, truck or trailer problems etc. They still go places without reservations anyway and try to get a trailer space in or near a location where they are traveling. So far, they have been lucky. I guess we all need a change in our lives to try to do something to get away from the monotony of doing the same thing day after day.
Sorry I made a book out of this again. It’s just releveling to me to chat with someone and get away from the TV once in awhile even though it probably doesn’t mean much to them. I’m selfish I guess.
Love hearing from you and for putting up with the rambles.
Take care,
Ray-
Hi Ray,
Thanks for writing back! It is nice to hear from you and I hope the start of your week is going well 🙂
The “keymaster” title on my profile is because I am the forum moderator, so that title basically just highlights for me and others that I can make edits / adjustments to others posts, ie. edit for grammar, or delete inappropriate content. I believe users can only edit their own content/posts, but I can remove or edit everyone’s posts so that is the purpose of the title. Hope this helps clarify!
Coffee with friends on Sunday was lovely, and it was so nice to sit outside and just watch my dog run around freely in the cooler weather. The sun was warm but the breeze was cool, so it was a nice mix of weather and much less humid, which was welcome in my books compared to the summer weather here lately.
I don’t blame you for feeling worried about the Esbriet, and the plan to work up to the full strength again. It does seem too coincidental that it wouldn’t be caused by that based on the symptoms that developed after increasing the dose of the Esbriet. Hopefully starting slowly and seeing how you tolerate it before increasing will help this time. I understand why you’d feel a bit stressed about it though! With regards to the nausea you’d mentioned, do you know what this was caused by? I randomly get bouts of nausea as well and this is new for me, and I haven’t done any medication adjustments lately. Maybe you can help me with the mystery of why this is happening, was yours food-related? Sometimes I think I get nauseated if I am hungry, or too full now but not sure why that would be the case when none of my medications have recently changed.
Good idea re: the protein bars and shakes! Let me know how you make out with them, and if you find a good one that is relatively low in sugar, high in protein and actually tastes decent as well. I always mix mine up with fruit if I can, and should start having them more often as I’ve kind of gotten away from them after eating basically whatever I wanted while on vacation. This included an entire lobster we caught and cooked, which was awesome!
I couldn’t agree more about the days going far too fast while on vacation. The week flew by, and it was a very emotional farewell and plane ride home. I’m hoping to go back out to visit though, as there is a new airline servicing the area that I live and there are roundtrip flights for under $200. This means that I could definitely go out to visit them for a weekend, and not feel guilty if the flight is only that much. I already want to plan another trip! Vacation is so rejuvenating for me for a number of different reasons, which I just actually published a column about today 🙂
I am feeling a bit better in terms of the “post-vacation blues” and don’t feel as unsettled anymore. I guess the long of the short of it is: I am happy with my job, home, friends and family surrounding me but now I am questioning, could I be happier? If I were living by the ocean, my answer to that would be yes without any hesitation. I really admire people who moved / travelled for jobs, especially with a family, as you say you did. It’s so neat to realize growing up that home is a feeling vs. a place and although its tough to leave people you grow close to behind when you move, with technology nowadays it is so much easier to keep in touch! We’ll see what happens…. I am giving myself a bit more time to settle in after vacation to really see how I feel once I am back to the daily grind of life here. If I did choose to move though, yes, it would be to Nova Scotia. I’d need to remain in Canada for my access to Canadian healthcare and the cost of living is significantly cheaper out east than it is here. We’ll see, but if I did relocate that is where it would be for sure 🙂
So cool for your son and his wife to have purchased a 5th wheel. That would be so much fun to move it around different areas. I know friends who do this each summer, they move it every season to somewhere different and I always thought this would be neat to do as well. This is becoming a very popular option for sure, so my guess is that is why campsites need to be booked so far in advance. We did this as part of my visit to Nova Scotia, we stayed in a 5th wheel camper the last night at their campsite and had a fire, played guitar, etc. It was truly magical! They also gave me this most beautiful necklace made of beach glass from the beach in Cape Breton and a little jewel that says: “let the sea set you free”, which suits me perfectly. Ah, I miss them all so much!
So glad you choose to write back and keep me updated on things and that you’re willing to chat about all my antics. If I’ve learned one thing over the years is that I can be both pretty indecisive (ie. to move or not move) or impulsive when it comes to things I want. But, life is short as we know, right? When I feel something, I just kind of go with it … a bit free-spirited you could say! It’s so nice being able to chat with you about this stuff.
Have a great day and hopefully a wonderful week 🙂
Charlene.
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Hi Paula,
I’m happy you didn’t have to keep the 02 unit with the cart. That looks like a real headache to take anyplace, especially in a car and you are the driver.
I guess they are still working on portable ones to make them more portable and still provide as much 02 as they can. There must be some tradeoff that a person can get for what you need. Hope you can get the new portable soon.I never thought about a benefit of dry skin in that nothing sticks to it. LOL We live in an area where the humidity is very low, so I don’t have to worry about that.
It’s nice your kids live close to you now. It sounds like your daughter that went to work for TSA has a good Government job. What does she do for them? Does she work in NY or VA or is there a branch closer? I retired from a government transportation job. I worked for the FAA. One of my sons retired from the Air Force 2 years ago but then went back to work for them after he retired. He was an F-16 and F-35 Electronic Tech. The Govt has pretty good pay and retirement. Good luck to her.
I know how it goes with school kids keeping you busy. It seemed like we always had to take ours someplace all the time. The boys always had to go to band practice and the girls had Drill Team, Cheer Leader or other meetings to go to.
I don’t have the SOB issue and now after taking Hydrocodone (NORCO) 5,375 MG I no longer have the dry cough. I started taking the NORCO before I started on Esbriet, so I don’t know what to look for an improvement from using Esbriet. I guess maybe, time will tell. Maybe things will get worse for me in time and then after taking Esbriet it helps, I will know it is working.
No, I don’t recognize the picture of the person with you in your posts. Was he someone you took a “Selfie” with? I thought it might have been your husband. I don’t have a good memory of people’s faces. I am very embarrassed sometimes when someone asks me if I know who they are when I see them. I worked at the Idaho State College for 6 years, have done TV servicing since 1956 and traveled around while in the FAA and people and faces just change so I have given up trying to remember who’s, who. The picture I use in my post was taken when we were in England in 2010 and that happened to be the picture I used for Facebook and that is what the IPF forum posts.
We don’t have a lot of room to move the laundry from down stairs to upstairs, but I have thought about moving it to the garage. We have a 24×24 ft garage just off the kitchen and 3 steps to get to it, so I have thought that would be a possibility.
You mentioned that maybe you are considering going back to volunteering to work with Hospice. Does it require a medical training or are you already trained in that field?
Thank you for the health inquiry. I am feeling fine and just can’t think of anything new that I can get sympathy for. My wife has been a good nurse for me. She seems to know when I am not feeling well and reminds me that I should take something for it. I envy how much she seems to do. I just sit around, and she is always doing something. She wont even let me get up on a chair to change a battery in a smoke detector or change a lightbulb. She is always up early in the morning to take me off my feeding tube at 7AM, crushing and injecting my meds and then washing the tube area and bandaging up over the tube. Then she gives me more meds at 1PM and then it’s more meds, bandaging, and then back on the feeding tube at 7PM for 12 more hours. Then it starts all over again. Some routine? We should get use to it since it has been going on for 7 years now. Maybe someday?
Enough said about me. Hope things start looking up for you and your family.
I hear a big Borate Bomber going overhead. We must have another wild fire going on nearby. They land and refill at our airport. It was a bomber base during WW2, so it is big enough for the big planes.
Until later,
Ray -
Morning Ray
My permanent portable will be here in about 3 weeks. They are on back order.
The guy in the picture is not my husband. Not sure if you remember the old show Night Court. Well the guy in the picture is the guy who played Bull the bailiff. Met him at a celebrity soft ball game
My daughters works at an airport in Worcester, MA. She could have taken a full time job in Boston at Logan but the hours were crazy and the commute and parking is horrible. She is hoping that with more airlines flying in and out of Worcester will get her a full time job. But her benefits are what they would be if she was a full time employee.
Volunterring with Hospice does not require much in form of education or training. But I have my masters in social work, spent many years working as a advance life support EMT. I have my social work license but am letting it slide this year. I have never used it but kept it up in case, but given my health status its kind of a moot point now.
I almost joined the Air Force when I was graduating from high school. Wanted to be an air traffic controller. My friends talked me out of it. Probably would have gotten fired with the bulk of the controllers when Regan went beserek.
Your wife sounds like an angel. You are very lucky.
If you moved your laundry out to the garage in the winter time would you be able to keep the area heated so the pipes do not freeze? And is the garage connected to the house where no one has to go outside to get to the laundry?
Well I have to get going. Having a window repaired (hopefully) today and supposedly they are suppose to finish up on a few things that need to be done on the new deck. Makes me wish I held back a couple of thousand dollars when we gave him the final payment. He was not the one doing the work on the deck but he was who contracted them. He was suppose to be here last week but it rained. But he did not call to reschedule. I reached out and he said he would be here today, not raining today, actually pretty nice. So if he blows me off he will see a side of me that he probably will not like. lol
Talk to you later
Paula -
Good afternoon Paula,
On your posted picture. I kind of thought that you must have been referring to the guy with you in the picture as being a celebrity or something by the way you said it. I never did watch Night Court, so I didn’t know who he was. I watched a lot of Judge Judy and Peoples Court all the time.
It didn’t dawn on me at the time, but I should have suspected that your daughter would be going to work at one of the airports nearby. I was just thinking of TSA home office locations. It might have a lot of good job opportunities for her. She might like Worcester Regional Airport and maybe she could get better advancement possibilities at Logan International Airport. There would be fewer people to compete with for advancement. They seem to have quite a turnover of employees here locally but maybe they have left because they advanced to other locations for better pay. We have just a small airport here, so it doesn’t compare to the Worcester Regional Airport.
I should have guessed that you had had previous training in health care since you stated that you had been doing that kind of work before. EMT training and your master’s in social work should well qualify you. I had just brief medical training when I was drafted into the Korean War. I was trained as a combat medic at Brooke Medical Base in San Antonio, Tx. In Germany, I worked in the emergency room as an Ambulance Tech in a 150-bed hospital for 8 months and then as a Medic for an Infantry Regiment for 8 months. I was in the Army for only18 months though, so I didn’t get a lot of medical training. They let me out of the service early because the war was over, and I had to start college at that time.
Yes, you were probably lucky you didn’t take Air Force Air Traffic Controller training and maybe ending up in a civilian ATC job after you got out. I was working for the FAA when Regan fired all the ATC people. He really destroyed the ATC program when he then hired a lot of people and gave them very little training to do the job. They have had a lot of in-flight and close call landing and take-offs incidents as a result. It is a very stressful job. Especially at the larger airports and Air Traffic Control Centers.
My employment with the FAA was as an Electronics Technician maintaining and repairing ground to air navigation equipment such as VOR, TACAN, Microwave, Tower Equipment, RADAR, ILS (Instrument Landing Systems), etc. The only thing I had to do with Air Traffic Control was testing and repairing the equipment they used.
Yes, our garage is connected directly to our house and is fairly well finished and insulated. We do have a furnace vent in the garage too, so it never gets below freezing in there if I wanted to move the washer/dryer there. Also, the main floor of the house is a couple of feet above the garage so if I ran the water pipes through the wall to the basement water source, it would be a real short run. I don’t think I will have to worry about anything freezing.
I hope your contractor gets your deck finished up for you soon. I know I have had a lot of problems when I hire a contractor to do a job and he ends up sub-contracting the work to other people that never show up or do a bad job when they do. I’ve tried to always try to get a contractor that is bonded, licensed and insured with the city so if it turns out to do a lousy job, I can go back to the contractor to straighten it out. I also try to never completely pay them off until I am satisfied with the job. They seem to always ask for at least 50% down to do a job though and to get it straightened out it ends up costing more than the initial 50% I had held back.
Better close now. Got to get something done.
Ray -
Hi Charlene,
Thank you for the explanation of the Keymaster title and job. I imagine it keeps you really on your toes keeping up on all of people’s posts.
As far as the nausea, it seems to crop up without any reason that I can put my foot on, I really have no idea what brings it on. My wife keeps guessing things I have eaten or done that might have caused the onset. We’ve spent 7 years trying to figure it out and it is possible it was caused by just everyday eats or physical activity. This morning I woke up feeling sick again and my wife mixed and gave me some Finnigan for the nausea. It was given to me at 7AM and 5 hours later, it didn’t help. Under some of the IPF sites side effects listings, it states you might have bouts of nausea with IPF. That is all I can conclude about it. I will probably not try to eat anything today, so I won’t aggravate it.
I haven’t purchased any of the protein bars or powders yet, so I can’t report anything on that. We only go to COSTCO about once a week and that might be coming up soon.
WOW! Catching a lobster and cooking and eating it makes me hungry. I love lobster. We don’t get much fresh seafood locally. It is usually shipped in by air on special occasions or we get it frozen. The ones they ship in by air are in the 5-6oz category and way overpriced. We do have a Red Lobster Seafood Restraint here, but everything is priced sky high. I do purchase a lot of frozen shrimp at the markets and they seem to taste pretty good if you thaw them slowly and don’t overcook them. Everything seems to have the label “Previously Frozen” on it. Nothing tastes better than fresh seafood or fish.
The $200 RT plane ride does seem to be within a nice range for the travel to Novia Scotia. With gas and motel prices being as high as they are, that would be the thing to do when you can. Especially for the rejuvenating aspect. Maybe someday you can move there?
We did travel a lot when I worked for the FAA. We would go to different places in the 11 Western States a lot. Sometimes we would only be there a week or two. We had 3 small children at that time that were not school age yet and go from motel to motel. After 3 years of travel, we rented a house in a central location, so the family didn’t have to travel with me. Other times, I would have to go the Oklahoma City for training. The classes were usually 4 weeks to 3 months. One of our children was even born there. Then we transferred from Installation to a maintenance job. We would be at different locations, but the stay would last for several years. We would rent a home or apartment. Then, in 1970 we transferred to where we are now and purchased our present house. I have since retired from the FAA in 1981 and went back to college and trained to be a computer programmer. I worked for the Local State University and then retired from that in 1993. I have been retired ever since.
A lot of people here purchase motor homes or trailers and go to Arizona for the Winter and then come back to Idaho for the Summer. Some even purchase permanent property in Arizona and just leave their trailers or motor homes there. We call them “Snow Birds”. We see a lot of people going south in the winter from Alaska and Canada too.
I’ll close for now. I do have a few things I better do before it is medicine time at 1PM again. Same old things day after day. Get up, take medicine at 7, sit and watch tv, get medicine at 1, sit and watch tv, then medicine at 7PM, sit and watch tv. Then at 10PM its bed time again.
I hope you are feeling well. I’m happy you like your job and have a lot of friends and relatives close bye to visit with. That should be conducive to a good life.
Enjoy the rest of the day and hopefully the weekend.
Ray
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Hi Ray,
Thanks for your reply and letting me know how things are going with you!
Yes, it certainly does – a lot of work goes into replying to each person’s post personally, but I think this is what is so special about our forum in particular; the personal replies. It is also very meaningful and therapeutic for me to be able to do that as well. As a result, I am so thankful for everyone who takes time to write on these forums and share their experiences.
I hope your nausea is a little better today Ray. I find nausea so difficult to deal with because no one can see that you’re actually feeling unwell, but you might feel awful. Another one of those “invisible” side effects of IPF. Frustrating! I get this too, and maybe it is just an IPF issue as I haven’t been able to identify what brings on the nausea either, it just seems to happen. Glad you have your wife to help you manage it, she sounds wonderful!
Keep me posted on the COSTCO bars. I am going this weekend, so I’ll keep an eye open for the protein bars just because I enjoy them quite a bit, however, I haven’t been able to find them for quite some time here in Canada. My brother works for a new startup company in Canada right now and their bars are flying off the shelves…. they’re called Suzie’s good fats bars. I love these, and they follow the ketogenic idea of low carbs, high *good* fats and I find my body actually craves these, even though they have very little sugar in them. It might be an option for you if you can’t find the Costco bars, they just aren’t meant to be a meal replacement, is one thing to note.
I couldn’t agree more re: fresh lobster and seafood while on the coast. Let me tell you, I sure got my fix of it while visiting Nova Scotia. It was wonderful 🙂
I think you’re onto something in terms of just flying there for now for a visit, as $200 RT is so manageable. Maybe in a few years I can consider a move. As much as I want to, I am thinking staying put is the best option for me right now only because I have so many factors to consider. If I can visit to feel rejuvenated then that is enough for me for now I think. We’ll see how I feel as a little time passes. Thanks for all of your kind words regarding this, and for hearing me out/letting me vent.
All that moving sounds exhausting, but such a great way to see the countryside as well! Kudos to you and your wife for being able to do that with such small children, that is amazing. Yes, lots of people here head south for the winter as well, especially those that are retired. My grandparents used to do this and I was always very envious, although they worked hard for the luxury to be able to do that. 🙂
Thanks again for writing and catching me up on how things are going for you. Glad you can add ‘contributing to the forums’ to your schedule for the day, as I always enjoy hearing from you!
Until next time, take care,
Charlene.
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Well, I guess that I’ll give Esbriet a go, got my first months supply about an hour ago. It has been quite an ordeal getting it. VA is stalling wanting a biopsy despite have two Pulmonologist from different cities saying I have IPF and two different High Resolution Scans, each done in a different facility and different city. But despite the VA being very difficult, my Pulmonologist went to bat for me and got Humana to reconsider their 2 denial letters and approved my prescription for Esbriet; but when the Humana Speciality Pharmacy called to ship my 30 day supply, they kind of casually mentioned a Co-Pay of $2,274.59 for the month’s supply. I said not to ship it as I could not afford it. They said that they were going to turn it over to their Financial Depart to see if they could help on the co-pay. A couple of days later they called again, only now there was “Zero” co-pay. I don’t know how, but it went away.
So tomorrow morning I finally start my Esbriet. I consider it about 90 days late, as the prescription was written back on June 27th. Wish me luck, it has been a long wait. Bill Sherman
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Hi Bill,
It is nice to hear from you, thanks so much for writing! How are things going for you?
Sorry to hear that the VA is giving you so much hassle for getting this life-prolonging medication. That is infuriating, especially when you have the records and documentation to show your diagnosis. Have you started the Esbriet yet? How are you tolerating it so far, if so?
Your experience of “losing” the co-pay sounds very similar to Ray’s. I remember him telling me that he wasn’t sure how the cost to him became zero as well, but it did and I’m glad the finance department/drug rep companies are doing this for patients. Kudos to them, and I guess the most important thing is that you’re getting the medication you need. I do hope you’ve been able to start it with as few side effects as possible though!
Please let us know how you’re doing when you can Bill.
Warm regards,
Charlene.-
Hi William,
I may face some VA challenges fr esbriet son. Which VA and how long ago?
Thanks,
SteveD
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Goodluck Steve! I hope William is able to provide some helpful tips for you.
Charlene.
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Hi William Sherman,
I empathize with you on your plight to get ¬the VA to approve your Esbriet prescription. I ran into the same problem with Blue Cross and Blue Shield. I think that they are hoping we might die from the IPF or other things and then they wouldn’t have to pay for it. It is a real high-priced drug, so I can kind of see why they bock. The insurance companies delays for a long period of time are maddening when all we want to do is live a little longer.
Good luck with your startup of Esbriet. I was only on it for about 2 and ½ weeks and I developed a bleeding stomach ulcer and had to be hospitalized and stopped taking it. Now I must wait another 30 days before I can try it again to wait for the ulcer to heal.
I hope your pulmonologist wants you to start slowly so you can get use to it before you start the full 9 pills daily dose. I guess, after reading other peoples posts, the side effects can show up even after you have been taking it for months.
Good luck with your progress and I hope things work out well for you.
Ray King
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Well said Ray.
Thanks again for sharing your experience with the Esbriet for others to learn and possibly benefit from 🙂Hope you’re doing alright.
Charlene.
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Hi Charlene,
I’m just getting around to try answering your last posts to me. Sorry, but time just got away from me with things happening.
Yes, my nausea finally abated. Thank you for your concern and comments about it.
No, I haven’t tried the COSTCO protein bars you suggested. I’m keep forgetting to go to the COSTCO to get them. COSTCO is always crowded with cars. I do have a handicapped parking permit because I can’t walk far but it seems like everyone either has the permit or just parking in those spots anyway. I’ll still trying to get there sometime though.
I did lookup the availability of the Suzie’s Good Fats Bars and the company your brother is involved with. I see the bars can be purchased at several places in the US at anywhere from about $2 to $2.75 each. There is a shipping warning that the chocolatey coating melts easy in the summer heat, so they shouldn’t sit in the mailbox for a long time. They do have good reviews and as you said have a good keto rating. Thanks, it’s worth trying.
I’m still drooling over your lobster eating event. All I can do is dream about it though.
I am just getting over another problem I found out that I must watch out for in the future medical and dental visits. Last Wednesday, I had a dental appointment to try to remove the cap from the furthest back right lower molar ‘implant tooth. The cap mount had been getting loose over the last few years and normally they can remove the cap, tighten the screw that holds the implant mount the cap is glued to, and then re-glue the cap back on the implants mount and you are done. Nothing is ever simple for me. They couldn’t get the cap off to get to the screw. They had to destroy the cap by cutting it off and then make a new cap. So, a $79 tooth fix was going to run into $937 for the new cap.
The dentist had a new computerized unit that would take pictures of the tooth area and send them to a computer. He had to have me open my mouth as wide as I could, and he used his thumb and picture probe to hold my cheek away from the area as far as he could. It took him about 35 minutes to take the pictures as the computer was building the cap image on the screen. After the pictures were generated, he used a program like Photoshop to edit and fill in some places to resize and design the cap for the tooth. Then the computer would send the design to a cabinet in the next room to cut a rectangular piece of porcelain into the designed tooth cap with 2 diamond water cooled saws. That took about 10 more minutes.
The whole purpose of the process was to be able to have a ready-made tooth cap to install without them making a tooth mold that would have to be sent to a lab to finish in about 2 weeks and sent back to the dentist to install. But, after he made the tooth cap, it was too large and didn’t fit properly. So, he had to do it “the old-fashioned way” and he made the mold to send to the lab for them to make.
The result was that I had a real sore jaw from him having to hold my mouth open so wide to try to remove and cut the cap, then take pictures for the cap design.
Then a side effect came on while I was checking out of the dentist office. The nurse asked me if I had a Latex allergy. I told her I didn’t think so. She said, “your jaw and lips look swollen.”
After I got home, my lips were so badly swollen that I was slobbering because I couldn’t close my lips. My right cheek looked like I had stored a year supply of food in it. Later that night my tongue, throat, and left cheek had swollen up too. I tried taking some Benadryl to reduce the swelling. By Friday morning most of the swelling had gone down. So, I guess the next time I have any medical appointment of any kind, I will make sure to tell them not to wear Latex gloves.
I tried to cut this to as few words as I could, but I always end up making a book. Sorry! I didn’t really say anything about Esbriet so it’s a bad post for anyone trying to find out about taking it. I’ll quit posting for a few days to try to make up for it.
Love reading your posts to me and the other people.
Take care,
Ray-
Hi Ray,
Great to hear from you, and no worries at all about any delay in replying. Someone once said something to me that really stuck when it came to online replies/emails: “never apologize for having a life outside of being online”. I love that and it is so true! But, don’t just disappear either cause I like chatting with you 😉
How are things going now? I’m really glad to hear the nausea has subsided for you. Knock on wood, I haven’t experienced this in awhile as well. Maybe it was just a bit of a virus I had? Doubtful as it comes and goes so often but I’ll take it for now. I do however think I’m coming down with a cold though, which scares me. My ears are so sore, along with my throat and swollen glands. I’m trying to rest and drink lots of hot fluids to get rid of it before it amalgamates into anything.
Funny you mention you didn’t make it to Costco yet – neither did I! My friend and I were going to go on Friday, but we went for dinner and just chatted too long before realizing the store had closed. Oh well, another time. Yes, the Suzie’s good fats bars are so good! I say to my brother all the time that this was a good company for him to invest it, as they’re doing so well and my body actually craves them now due to the reduction of sugar they’ve helped me achieve. Yes, the peanut butter ones can melt if outside too long due to having no preservatives and a blend of healthy fats, so if you can, try to pick them up at the grocery store. I eat mine right out of the fridge so they’re cold (a friend puts them in the freezer) and they’re so good! Let me know if you do end up trying them 🙂
I’ll private message you a photo of the lobster eating event, it was amazing!
Aww, I am so sorry to hear of yet another “hiccup” at the dentist. How awful for you! What rotten luck, something has to turn around for you soon my friend. Had you ever reacted like that to the gloves they’ve used before? Yes definitely make sure they don’t use the latex gloves in future for you. Doesn’t it aggravate you that we can’t just be ‘simple’ when it comes to supplies doctors or dentists use on us? I feel this way with medical supplies as I am highly allergic to Elastoplas which is in most band-aids or dressing changes and I can feel the frustration nurses have when I ask for something different. Not our fault, but it sure can make us feel bad. Glad the swelling went down quickly with the Benadryl though and that the side effects didn’t last. What a tough day for you! Do you have to go back in two weeks then to get the mould? Did you have a hard time in the dentist chair with breathing? I really struggle with this as laying lat on my back is hard for me and then sometimes when they rest their hands on my chest they reduce my oxygen cannula. It drives me nuts.
Hope you’re doing well otherwise, and that your weekend has been restful. It’s a cloudy day here, but cool… yesterday was the perfect fall day and I quite enjoyed having the windows open and tidying up the house. I have some candles going right now (away from my oxygen, and I don’t burn them too long due to my scent sensitivity) and am going to make a slow-cooker butternut squash soup today. I’m looking forward to that!
Tomorrow (Monday) night I’m picking up a friend who also works for BioNews from the airport as we have a funeral to attend on Tuesday. Our Columns Manager, Serena, passed away last week from complications of Pulmonary Hypertension/PVOD. Our hearts are pretty broken, so it’ll be a tough week.
Talk to you soon and hope you enjoy your Sunday!
Charlene.
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Hi Charlene,
I won’t stop chatting with you as I like the chat too. It’s not often we get someone to listen to all our problems, but you seem to get your share of it. I seem to be able to generate problems often without even trying hard. Thanks for listening and replying especially when I think my problems dwarf what you must put up with.
The nausea problem seems to come and go. I have read that it is common with the Gastroparesis that I have so I guess I better get use to it. Early this morning I again woke up nauseated and had the dry vomiting problem. I took a Zofran and hoped that that would let me go back to sleep. I laid there still feeling nauseated for a little over an hour that way and noticed my wife kind of wakening up. I said her name kind of quietly and she immediately said “what?” so I knew she was awake. I asked her if she would mind mixing and giving me a Finnigan. I wasn’t sure where she had put the bottle of them or I could have done it myself. I can put them in the syringe, hold the J-Tube in one hand and reach the syringe plunger to inject it with my thumb and fingers with the other hand without squirting it everywhere. But, it is a lot easier with the two of us doing it. I don’t feel too bad about doing it when I see some of the nurses do it when I am at the hospital. Even though I offer to hold the tube for them and they say they can handle it ok, but a lot of them end up getting my hospital gown or bed covers all wet. Anyway, soon after she gave it to me I evidently dropped off to sleep. When I woke up my night feeding unit was alarming showing that I was out of food. It was time for me to get up and I didn’t feel nauseated. So far, the rest of day is going on fine and I am not going to eat anything today to change the feeling. Maybe I’ll try some food tomorrow if the night goes ok. Enough about that.
I do have to go back to the dentists next week but not to get the mold. He did that before I left his office last week and he sent it to the lab. It will be to have him put on the new tooth cap that the lab made from the tooth mold he took. All he should have to do is glue it on the Implant stud and maybe just grind it off a little if it doesn’t fit quite right and then polish it. If the lab made it wrong, he would have to send it back to them and I’d go through it all over again. I’ve had good luck with caps the labs have made before, so I hope this goes well also. I’ll make sure he doesn’t use Latex gloves when he does it.
How are you feeling now? You stated that you might be coming down with a cold or something. There has been a lot of cold type illnesses going on in our location. My wife had something that lasted for several weeks, and so did a lot of our neighbors. It was kind of just a sore throat, cough and sniffles but it just seemed to drain everything out of her. She didn’t feel like doing anything and just took cold medicines and slept a lot. She feels a lot better now. I feel sorry for your plight because you must go to work and do a lot of other things. We can always just hunker down and do nothing until we get over it.
I’ll have to check our larger grocery stores to see if they handle Suzie’s Bars. Walmart or COSTCO would probably be my best bet as I’m pretty sure that the couple of stores that we have, and cover Idaho and a couple of surrounding stores, wouldn’t. That is because they generally can’t just order a small quantity of them, so it must be an item that has some demand. I’ll look around. If all else fails, I can always order some from Amazon. I will let you know if I ever get any to try.
I haven’t noticed the private message you were going to send me that you took at the lobster eating event you had in Novia Scotia. I looked at the messages on the forum. I’m not sure I am looking in the right place for it. When you send it, I’ll try to watch it if the drooling doesn’t cover my computer screen.
How did the slow-cooker butternut squash soup turn out? My daughter made us a zucchini squash soup a couple of years ago and it turned out well. Last Christmas I had purchased us a real fancy slow cooker with all the frills and I was going to use it to make a lot of the recipes I had been reading about. One of our sons had showed us his and he really liked it. Well, we got it and all I ever made with it was some spaghetti and meat balls once. The recipe made so much we had to throw away most of it. Also, the spaghetti all stuck together and came out it clumps. I wanted to try a roast or chicken but never did because all the recipes seemed to be for 8-12 people and there is just the 2 of us so we would have had to freeze a lot. It did work for boiling eggs. Anyway, my daughter and her family of 4 live in the city and I decided to give it to her. She had mentioned she would like to purchase one, so she could get something cooking before she went to work and then she wouldn’t have fix something when she gets home. She works a night shift from 11PM to 11AM 4 days/wk. She really likes it. Her husband and a son uses it too.
I was sorry to hear about you losing your Columns Manager due to the PAH. It’s always hard when you lose someone you are close to. I hadn’t heard of PAH, but it appears to be one of the other things that causes a person to die from not receiving enough blood to the body. Had she had the problem for a long time?
I hope your weekend went well for you?
I’ll close this book chapter for now. Take care.
Ray
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Hi Ray,
Thanks so much for your reply, and so sorry for my delay in getting back to you! It has been a bit of a tough week, and I’ll be glad to see it end. Unfortunately I dealt with a family emergency this week, attended a funeral of a friend/colleague, had a friend visiting from California (this was a great thing!) and am still recovering from the cigarette inhalation last week. It has been a lot, so I’m pretty tired but will do my best to thoroughly respond to you, as I really like writing with you as well!
Has the nausea subsided for you, as your body (hopefully) adjusts to the starting of Esbriet again? Actually, I seem to remember October 15th being a significant date for you for some reason, so maybe you haven’t started the Esbriet up again yet? Anyway, let me know as I’ve been thinking of you and hoping that if you have started it, it’s going alright this time. Is Finnigan a type of anti-nauseant you use that is effective? I don’t think I’ve heard of it but I have heard of the Zofran, and have used that as well. I think I have pin-pointed some of my nausea issues to stress, as when I am upset or overthinking something, it seems to aggravate sporadic bouts of nausea. I can’t link it to anything else anyways. Thankfully it isn’t too bad right now and hasn’t been for awhile, which surprises me given the tough week I’m working through. Glad overall your nausea wasn’t bothersome the day you wrote to me… we need to celebrate the little things, right? 🙂
Hope your experience back at the dentist went alright? Still can’t believe you had the latex reaction, that is horrible and I hope they noted that so next time you don’t experience that again.
Thank you for checking in with me, you’re so kind. I am still fighting sore ears and a sore/scratchy throat but *knock on wood* it doesn’t seem to have turned into anything. I am washing my hands constantly though, and avoiding people who are coughing at all costs. A colleague of mine has bronchitis and I am so nervous to be anywhere near her, but really, she shouldn’t be at work anyways since she is exposing more people than just me. How is your wife feeling now? Sounds like she is on the mend, which is what I hope! Do you get the flu shot, or what has your doctor said about this Ray? I’m curious to hear about this, as it is time I start going to get it if I am going to (which I think I am).
Sounds good re: letting me know if you try the Suzie’s good fats bars. My brother said they are in Walmart but not in Costco yet, and are only just coming to the US now so you’d have to check a larger store likely to find them, like you said. They also changed the name/branding to break into the US… apparently you’re going to get them called Love Good Fats bars instead.
I totally forgot to send you the picture. I am going to look into doing that now, to see if I can get it. To check private messages (which is how I’m going to send it to you), click here: https://pulmonaryfibrosisnews.com/forums/members/raymond-c-king/ (you just have to be logged into your account).
I love my slow cooker, and am always looking to try some new recipes so if you had any good ones from when you had yours, feel free to pass them along! The butternut squash soup turned out so good, and it made more than I thought so I put some in the freezer and brought some for friends lunches this week. It was nice! It is our Canadian thanksgiving this weekend (so I may be offline a lot of the weekend) and I’m going to make another batch of the soup to bring home for part of our big dinner. It is supposed to be cold and rainy here all weekend, so that will be a nice, warming part of dinner hopefully.
Thanks so much for your kind words about Serena. Many of our hearts are still aching at BioNews, and I can confirm mine certainly is. I am in disbelief a bit I think, and will always miss her. She was such a unique and amazing person! She was diagnosed with PAH in 2013, although I’m not sure it was managed the best. Her and I share some of the same doctors/medical team as she lived in the same city as me… this is an added layer of complication now too, as I have some fear that they are also ‘missing’ things when it comes to my health. However, that could be all-consuming so I am trying not to let my mind go there at all.
Anyways, I should wrap up my novel and see if I can figure out how to get that picture sent to you. Enjoy your weekend and looking forward to hearing from you whenever you have some time.
Warm regards,
Charlene.
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William Sherman,
VA is stalling wanting a biopsy despite have two Pulmonologist from different cities saying I have IPF and two different High Resolution Scans, each done in a different facility and different city.
Sorry to hear that about the VA, I go to the Palo Alto VA and have not encountered any issues. I did have two VA doctors disagree with the diagnosis, one thought the fibrosis was due to autoimmune issues and the other thought it was IPF and the medication for one does not work for the other. I did not want risking side effects if the medication would not work for me, I went for the biopsy and the diagnosis is IPF and while one doctor wants me to start with Esbriet my primary pulmonary doctor still believes that some of my symptoms are due to autoimmune issues and wants me to see a couple of other doctors, he thinks my joint issues, dry eyes and mouth, and skin issues that come and go warrant further study. Other people with IPF have not had an issue getting medication from the VA, so I am very curious which VA facility is denying you drug treatment, it does not sound right unless they suspect autoimmune issues.
gil
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Hi Gil,
I know your reply was to Bill, but I just wanted to say thanks for sharing a bit more of your experience regarding the VA and your process of getting diagnosed. Are they still suspecting your other symptoms that you listed are due to something other than IPF? Just curious.
Very grateful for all the information you share with this forum and the time you take in responding 🙂
Hope you’re doing well. It’s always so nice to hear from you!
Charlene.
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Hi Gil, I had the same results with the blood work that was done, that they were thinking along the lines of the autoimmune. Kind of funny one of the tests said I was allergic to pigeon poop. Guess that means I can’t hang out on the bench and feed the pigeons. lol. Biopsy showed I have IPF. After that was done my insurance company ok’d the medication.
They put me on one med, forgot the name it started with a M. That did nothing. Then last Dec they started me on Esbriet. I was doing great. No side affects, and it seemed to be doing what they wanted it to do. Then 3 1/2 months in I developed an allergy to the Esbriet.
Now they have me on OFEV. Not sure how well its working due to a major stress issue I was dealing with in July that caused the fibrosis to get worse and I am now on O2 24/7. For right now they still have me on the meds. That might change after the CT next month and then my visit at the Mass General Hospital with my other pulmonary doctor.
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Hi Paula,
I know your reply was to Gil, just touching base to see how you’re doing? I saw you mentioned you’re on oxygen 24/7 now… was that the original plan when they brought oxygen to you a few weeks ago? I thought it was just for nighttime or exertion originally? This totally could be my assumption though, I just hope it doesn’t mean you’ve gotten worse since having to going on it 24/7. Thinking of you as you adjust to using oxygen, I remember that time well and know it isn’t always easy.
Warm regards,
Charlene. -
Hi Charlene,
I’ve been sending you, I thought, a Private Message and I am not sure got out to you. I have sent it 2 times to make sure. Maybe, I just don’t understand the “Private Message” procedures, but it showed that I posted the Private message but later disappears when I try to find that I sent it. If you are getting my “Private Messages”, please just post “I got it” to me on this forum area and I will know it went out OK.
Thanks,
Ray -
Hi Ray,
You’re wonderful – I got your private message! 🙂
I’ll spend some time this afternoon replying to you for sure, but you did it right … thanks so much. Chat with you on there soon!Charlene.
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Hi Paula,
I haven’t had a post from you in quite a while, but I see you have had to go on Oxygen 24/7 now and it is probably hard to get siked up to post things again. I have been reading your other posts and it sounds like things have really changed for you. I guess it is inevitable that this will happen from IPF. I’m sorry it came on so vigorous to you. It seems that it gets worse with some people for no apparent reason. I am happy that you were able to get settled in your new house before the Ox 24/7 came on. I hope the stress you were under didn’t hasten it.
Please keep us posted on your progress if you feel up to it. I’m sure we are all praying for you.
The best to you,
Ray King
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Good morning Charlene and Ray
Thank you for your kind words and thoughts. I can not have the oxygen on when I am at the computer, too close to where the gas heater/dryer etc. So I space my time down here.
Charlene, initially it was suggested by the nurse who did the pulmonary function that I be on the O2 at night. But when I gave the list of my sat rates to my doctor it was determined that I need to be on it all the time. If I am just sitting around doing nothing I can be off it for a bit. And I tend to do that when I am driving so I am not using up all of my portable O2 as I am still waiting for the one that runs on battery power. But as of late, I have noticed that I am getting periods where I get chest pains that go away when I put on the O2. Eventually I will probably be at the point where I can only have it off when I am taking a shower, at that point I will probably get a lap top so I can go on the internet from upstairs.
Ray the thought of the doctor is that the stress from dealing with selling the house caused the fibrosis to get worse. Hence my need for the O2. But the doctors had told me earlier that the IPF can for unknown reasons all the sudden get worse. I guess its the nature of the beast.
I am getting a CT done next month, then will see my guy in Dec at which time I will probably be making the appointment to see my guy in Boston. My doctor down here has been keeping Boston in the loop. Not sure what he (in Boston) will decide on whether or not I am now a candidate to be put on the list, from what I heard is a very extensive thing you have to go through to get fully on the list. I have lost close to 30 pounds since I saw him last Dec and my weight was something that would have kept me off the list.
How are you doing Ray? Have things started to calm down for you? I saw mention that your wife was not feeling well. Is she feeling better now? I hope so.
Well its almost time for me to get back up stairs and back on my O2. So I will end here for now.
Talk to you both soon.
Paula-
Hi Paula,
So great to hear from you, sorry for taking a few days to reply. I actually thought I was over a bit of a cold and was feeling better but today I came home from work with terrible flu-like symptoms. I’m very nervous its going to develop into something: having a hard time keeping food and fluids down, and really hot/chilled throughout the day with feeling achy all over. It really stinks!
It is nice to get an update from you though, thanks for writing 🙂
About the O2 use, I’m glad that the doctor identified the difference for you even if it is a pain to be on the oxygen 24/7. Keeping your other organs healthy by being properly oxygenated is so important, and hopefully it makes you feel a bit better too knowing you’re getting enough oxygen. It is definitely hard to adjust to though, the “tethered” feeling was really tough for me. I’m glad you’re finding ways to manage though, and hopefully still able to do the things you enjoy. I often take my O2 off while driving as well, as I fear my lungs will become too dependent on the oxygen if I am on it all the time. Although, I know that’ll eventually happen anyways … perhaps it is my exercising a bit of of control or stubbornness? 🙂
Keep us posted on the progress re: your listening status Paula. The evaluation is quite intensive, but there are a lot of amazing teams that help you along the way. Hang in there and glad to hear that for now things are going okay for you. Think of you often!
Cheers,
Charlene.
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Good Morning Paula,
Thanks for the explanation of why you can’t use your computer very often when you are on 02. I have both a Desk Top and Lap Top computer. I used to always just use a Desk Top one for decades because I would put them together from kits and wanted powerful use for games I was addicted to. The last one I built was in 2009 and I have ended up using it very sparingly and now it is was still using Windows 8 and most of the games need Windows 10, so I didn’t keep up with it. Also, I had bad surgery in 2011 and don’t have the ambition to go in the other room to sit there and use it.
In 2012 my daughter gave me her Lap Top computer while she was staying here for 6 months between jobs. It had quit working and she was just starting a new job for the Navy Dept back East and they were allowing her to work at home on a computer for a month while they got her settled in. Hers stopped working and she needed a new Laptop immediately and went down and purchased a new one. A couple of months later, I fixed her old Laptop and used it until a little over a year ago when I bought a new one. A few months ago, I just ended up junking my old Desktop computer. It was getting obsolete and had no real value since it was homemade and not a normal brand computer. I am not sorry as I can now sit and use the Laptop while I sit in my recliner in the living room and I am on it a lot in the day. I think if you could buy one, you would really like the change and it wouldn’t interfere with your 02 setup. When I was on 02 24/7 last year, it didn’t interfere with me being able to use it anytime. Most of the Laptops have a Wi-Fi unit installed so it can communicate with your Internet Modem almost anywhere in the house. If it doesn’t have a built in Wi-Fi, you can always get a small adapter that plugs into the USB port and it will connect it up for you.
I figured the dealing with the new house and moving stress was at some of the source of your IPF getting worse. They say that stress is even a thought of what causes IPF. I’m sure it didn’t help yours.
Good luck on your CT scan next month and the possibility of going to Boston for further checks. I guess the list the Boston Doctor may put you on is for a lung transplant? Do you have any insurance that might cover some of that cost if you can get it done? If not, maybe there is a Foundation that might cover it. You are lucky you are still at the age where they might consider the lung transplant. I am over the 70s cutoff age so that could never be a consideration on my part. They say that if you are older, you probably wouldn’t live thru the surgery anyway. Congratulations on losing the 30 pounds so you could at least be considered to have it done.
Thank you for inquiring about my wife not feeling well. It seemed to be just a cold type crud that was going on in the US and lasted for a long, long time. She is feeling much better now and seems to back to her old self again.
I seem to be doing well. I have a Pulmonologists appointment on the 24th. It isn’t for new tests, but I assume he will start me on the Esbriet again since the bleeding stomach ulcer has not acted up again. He mentioned that when it was healed, he would start me back on the Esbriet but only 1 pill per day and then workup slowly to see how I was tolerating it. I still have almost a full 30-day supply of the Esbriet that I haven’t even tried very long and so far, it was causing problems. Monday, I had an appointment with my Home Health Care Doctor to see if I was not gaining any weight that a Dietitian at the hospital last month said I needed to gain. I had lost a pound since my last visit but he said to keep an eye on it and he would check me in a couple of months. My blood pressure was a little low 109/59 and he said it might be because I was a little dehydrated and I should try to take in more water. Also, he asked me if I have been feeling the cold. I told him I was always freezing, and he said it was probably because I don’t have enough fat to insulate me from the cold. Also, I asked him if I should worry about an IVC filter that was installed in 2011. I have seen ads on the TV that says if you have one, it should have been removed in 5 years. He said they are not any longer installing them unless it was extremely necessary, and he is making me an appointment to have a HRCT scan to see if they could or should remove it. He said they can break up and can go to the heart or lungs and even cause death. He said they sometimes must remove them by surgery if they have deteriorated too much. The CT scan will tell.
Other than that, the new J-Tube they installed last month seems to be working well and even though I am back to where I need the Hydrocodone for the soreness it causes, it isn’t leaking and seems to be anchored in where it won’t come out like the old one did last month. At lest the Hydrocodone serves a duel purpose of taking care of the J-Tube soreness and stops the dry IPF cause and chest pains.
Enough about me. I hope you get to feeling better. I know it takes a lot of your energy just raising a family and managing a household without all this IPF caused problems.
Good luck to you and keep me posted on how you are doing when you get a chance.
Thinking of you,
Ray King-
Hi Ray,
I know your reply was to Paula, but I just have to say …. you built computers?? That is so cool, and is a hobby that my nephew would absolutely go nuts over! 🙂
Did your Pulmonologist start you back on the Esbriet, Ray? I know I have an email from you to tend to, so if you mentioned it in there already, my apologies. If the doc did, I hope it is going alright for you. I will respond as soon as I can, just touching base with a few replies on the forums before tackling my emails. Remember how I mentioned I thought I was on the “mend” of whatever my scratchy throat was? Seems I have a bit of a flu/gastro-intestinal bug now. I came home from work today very chilled then sweaty, sick to my stomach and feeling very lethargic. I am up now after a long afternoon nap (4 hours!) and feel a bit better but definitely not 100% yet. Hopefully I’m on the mend very soon …
Thanks as always for writing, and I’ll get back to your email as soon as I can 🙂
Charlene.
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