Michael Lamkin
Forum Replies Created
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That’s 3-4 visits per week to the transplant center
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I’ve been told there are about 20 different meds to take after transplant and 3-4 visits to the transplant center. I was wondering if the meds taper off to a more reasonable amount and how long do the 3-4 visits last.
thanksMike
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I’m wondering if age or neuropathy have been the reason given for not qualifying to get on the waiting list. Although I was diagnosed with IPF two years ago, a neurologist I started seeing three months ago for the neuropathy has said he thinks I have a condition known as MLTD which is similar to LUPIS. He has had me on prednisone for 4 months and though I’ve regained a lot of feeling in my legs and feet the weakness hasn’t as yet shown much improvement. He seems to feel the IPF is caused by the MLTD.
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I’ve used the VA for all of the test they require to make a decision regarding a transplant and was turned down because of neuropathy and age (74). I had my first appointment at St. Joseph’s in Phoenix a couple of weeks ago and was told they had three additional tests they required before presenting everything to the committee that will make the decision regarding my eligibility to be put on the waiting list
I expressed my concern regarding the neuropathy because I currently use a cane and have difficulty standing up without using something for support ie. table or arm of the chair.
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Hi Liam
I think the normal DLCO level is between 89-110 so my reading of 30 isn’t good. My other numbers are in the 80’s so I’ll be asking my doctor what I can do to get the DLCO no. Up (if that’s possible) I’ve also noticed increased breathlessness over the past few months and that really …. I just finished 24 physical therapy sessions a few weeks ago which I feel were beneficial and now I need to force myself to continue the routine! ?
i was diagnosed with IPF a year ago but having had Valley Fever for a couple years before diagnosis I was told that the IPF was an underlying condition and therefore was not diagnosed until after the Valley Fever had gone dormant. Unfortunately the Valley Fever returned a few months ago so that could also be having an affect on the DLCO. Don’t know but hopefully my doctor who I’ll be seeing in late July will have a clue about improving the DLCO.
Upon exertion my oxegyn level can drop into the mid 80’s but is usually in the low to mid 90’s. I very seldom use the oxygen but find when I do on a 4 setting my level goes as high as 100 while at rest and usually stays around 92 while exercising.
Wishing you the best Liam
Mike
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Thanks so much Mark for your reply! I admit I’m possibly being overly optimistic that a medical miracle will result in a drug which not only stops the fibrosis but will also reverses the disease. My last breathing test showed my DLCO reading as 30 (I think normal is 80-110) with the FVC 81 and FEV 81 so I realize I’m probably in the late stages of this disease and I need to make a dicision soon.
Again, I really appreciate you sharing your experience! Have a great day!
Mike
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Sorry Mark, I just noticed this post after I tagged you with questions regarding this same subject. Thanks for the information as I found it very helpful. Do the post surgery medications have any negative side affects?
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Hey Mark, I’m considering a lung transplant and hopefully will be able to qualify for the program. I know everyone’s different but can you tell me what your experience has been with regard to recovery from the surgery and post surgery medications? I have to admit I’m more than a little anxious about the whole thing.
thanks and take care
Mike
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Too bad it’s not yet a reality yet. I’d use it in a nanosecond.
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Here is the link to the Egyptian laser study if anyone still needs it.
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Great idea Charlene. I’d be really interested in seeing the results whether they be favorable or otherwise. It would be great to find a meaningful treatment without the use of drugs which I personally despise
Have a great day!
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Hi Charlene
Thanks for your reply to my post a week ago regarding the laser therapy study and the financial burden placed on IPF patients since insurance companies don’t cover the cost. I saw my doctor today and she said that normally where truly unbiased studies are conducted by doctors there is no charge to the patient for treatments. Although she had heard of laser treatments she didn’t seem to have an opinion either way regarding their effectiveness I’ll keep following this forum to see if any kind of meaning measurable results are reported as I do find the laser treatment therapy interesting.
I hope all is well with you and everyone else on these forums!
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I’m guessing that most IPF/PF patients won’t participate in the laser therapy treatments simply because their insurance won’t pay for the treatments. Most patients are probably already financially strained by no longer being able to work.
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Thanks Charlene!
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Hi all! I’ve been on the Esbriet for about five and a half months. For the first two months the only side effects I noticed were increased shortness of breath, some loss of appetite, nausea and more weakness than usual. Then the nausea seemed to subside a bit the diarrhea started which continues even now. I also got a nasty rash on my arms and legs which was determined to be caused by exposure to the sun and that was eliminated by taking a medication for a week and covering my arms and legs when I go outside. I guess the people at Esbriet are serious when they say the Esbriet makes your skin sensitive to sunlight, which I ignored for the first couple of months, until I got the rash. Lesson learned! I suppose the diarrhea is probably an allergic reaction but I’ll live with it if the Esbriet is working. I had a CT Scan three weeks ago and my pulmonary doctor said he hought it looked a little better (?) than the one I had eight months ago although the radiologist seemed to feel there was little or no change.
I have a history of Valley Fever which, after 15 months, had finally gone dormant at the same time I was told I have IPF. A blood test I had a month ago indicated the Valley Fever had returned so I’m now waiting to see how my pumonary doctor wants to proceed. I’ll see him on December 18th. I’m guessing most of you guys aren’t familiar with Valley Fever but if you’re interested please feel free to google it. -
I just wanted to share my experiences so far after using Esbriet for a little over three months.
Worst side effects so far are diarrhea (constant after 7 weeks use) and a skin rash on forearms, hands, legs and scalp probably due to sun exposure. The rash started as red spots on my forearms about the size of a pencil eraser and then became kind of risen and started itching like crazy. My arms turned bright red even after the itching subsided. The rash then spread to my legs and scalp but fortunately I started to stay out of direct sunlight and taking medication before the itching got too bad in those areas. Severe stomach upset four or five times after using for about 10 weeks with full dosage. I’ve experienced a reduction in my appetite and a decreased tolerance for spicy foods. Blood work completed ever 30 days has so far remained normal.
The severe stomach upset seemed to usually occur after enjoying a spicy dinner. A medication taken for a couple weeks in addition to avoiding sun exposure has taken care of the skin rash. My arms and hands are still red and very dry and scaly even though the itching has subsided. I discontinued the use of Esbriet for 3 days and diarrhea went away but immediately came back after I started using Esbriet again.
I’d like to hear if anyone else has experienced these or similar side effects and if you have been able to manage them.
Thanks, Michael
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Hi Charlene, I’m not involved with a local support group.
michael Lamkin
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Hi Charlene
Although I think I can identify with some of your fears regarding this disease I must also say that I’m much older (72) than you so I can’t really say I know how you feel. Although Ive convinced myself I don’t fear death I have to admit I sometimes have a certain amount of uncertainty. Im pretty sure this uncertainty at times is perfectly normal. I was diagnosed a little over two months ago but i didn’t tell my wife about IPF until about a week ago. Although I’m sure she had a clue when I received my oxygen tanks and concentrator I let her think my COPD was just getting worse. My biggest concern with telling anyone was I guess I didn’t want anyone to feel burned but also I don’t want to be treated any differently than before. I also had just gotten over Valley Fever, a fungal disease which infects the lungs and has really nasty side effects, and didn’t want to disappoint her from thinking I was on my way back to being the “old Mike” as she had put,up a lot with me during the 18 months it took for the disease to go “dormant”(there is no cure). I told my daughter about the IPF a couple days ago but it was easier telling her if only because of the type of person she is, meaning we had spoken about previously the inevitability of “the circle of life” which includes everyone’s eventual death. We also have a dog and like you I feel badly when I think about leaving,him behind although I feel that, like people whe they lose a pet, he will adapt with time. I think pets are much more astute about the circle of life than we have given them credit. As always, I wish you and everyone on this forum my very best and thank you for giving us all a place to express our true feelings. You must be a very special kind of person.
Michael Lamkin
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Hi Charlene
im a little confused with regard to posting on the forums. I’ve noticed a few posts I’ve made seem to disappear into cyberspace and never to be found again. I’ve only tagged one person on my posts and there have been posters where I’ve tagged no one it some still show up. Does it make a difference if I post on an email update or if I go directly to the forum? i will tag you on this post.
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Hey Ray
just wanted to let you know I received the 771mg pills and they are in solid form. However it’s possible they also come in capsule (can opened and in powder form) but I don’t know.
Mt best and hope you’re doing well!
Michael
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Hi Charlene
I personally have not an acute exasperation but I can imagine it must be very frightening. My private primary physician (before I started using the VA) mentioned 6 years ago the scaring on my lungs and kept asking if I’d ever had Valley Fever to which I always responded no. Actually 18 months ago I was diagnosed with VF 6 months after being diagnosed with pneumonia (An incorrect diagnosis). Although I was just diagnosed with the IPF 3 months ago I had some pretty tough experiences with the VF some of which, in retrospect, I thus could have been the underlying IPF. I responded before regarding your inquiry regarding exactly what Valley Fever is but I accidentally deleted my response. ☹️ I could go on for a long time regarding what FV is so I’ll just say it’s a fungal disease which is usually airborne and breathed in by those infected. There is also no cure for VF and the best a person can hope for is eventual dormancy. Although the fungus is pretty much limited to the SW in the U.S. it is also found in some South American countries. Please check the internet for more info. as there’s a lot more to the disease.
Have a nice day!
Michael
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Hi Charlene
I’m not aware of any non-profits that afford aid for patients with this disease however I’ve never really investigated that avenue since I use the VA. Yes, the insurance co-pay is the patients monthly share of the cost of the drug. I’d really like to hear from those who are subjected to this expense and if they are able to get some sort of financial aid.
Hope you all have a great day!
Michael
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Hi Michael
Yes, I find the cost of these drugs amazing. While I understand that while developing a new medication or treatment is very expensive and most likely would not happen unless justified financially by the drug companies. A person is really at the mercy of the insurance industry or, as in your case, the drug company.
Sometimes I think the drug companies may be much more generous than the insurance company to whom you pay monthly premiums.
The best advice I can give anyone is to make sure to take full advantage of Veteren insurance benefits if you’re entitled to do so.
best regards Michael
Michael
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Hi Ray, I use the VA and it’s never too late to get started. For the most part their care is excellent and the highest co-pay they charge for medications is $34 a month but for the most part is $8-$11 a month per prescription. There are zero co-pays on ALL other treatments such as CT’s and X-rays. Also no charges for oxygen (even the concentrater). If expense is a concern I would urge you to consider taking advantage of the benefits you have EARNED!
wishing you the best!
Michael