[Mary Geissler]

Suddenly, everything insurance-related is getting more and more difficult. I am a St. of WI retiree and found two transplant centers who no longer, as of last month, will accept our good insurance. I do not know about this particular situation, but I do know that it’s disturbing that so many are suddenly having insurance issues. What’s the REAL reason why, I wonder?

[Mary Geissler]

I am glad to finally read where others are having issues with bending over! I asked my physician and the pulmonary rehab therapist why I could NOT put any pressure whatsoever on my lower abdomen – and bending over to put shoes on is impossible. They all seemed mystified why I could not, and actually felt pain/cramps. I still do not know why? Is it pressure on my abdomen? I have to say my consistent exercise program has made it some easier for me, but I went to mostly slip on Kizik tennis shoes – they’re a god-send. I have a double dish-drawer set up and do not use the bottom drawer anymore so I don’t have to bend. We have a Robo vacuum and floor washer that has been marvelous and the newer models do an excellent job.  I stopped making my bed until just recently when I find I can do that again (slower) now that I am walking 11 miles/week. Exercise has made such a huge difference in my life. But for anything strenuous, I have portable oxygen and then when I am working out I plug into a large oxygen unit. I do not cough except early in the morning to clear throat or sometimes late at night for some reason. I used to mix a ‘cocktail’ of cough medicines each night – now I seem to be able to not need them at all or very rarely. But if I could just bend over with no issues at all, I could do so much more. It’s very limiting to not be quite what I wish I was…but thankful for what I can do.

 

[Mary Geissler]

Mike: can I ask how old you are? I keep wondering when my cohorts post these interesting situations, and since I am awaiting news at 73, I just am so curious how it goes for others. Thank you.

Mary

 

[Mary Geissler]

Hi Russel; It all sounds so scary for sure but when you read about people who have undergone the surgery and it’s behind them, it is extremely encouraging. I do not know how old you are, but I am 73 and being evaluated for a single lung. However, I manage my symptoms very well right now – and so not sure of next steps. I have no other health issues so given my age, it may be a transplant would not be available for me until I age out of this process. I can see why they put limits, even if you are in excellent condition otherwise. The surgery can be draining and taxing for older people, but I suspect your faith will carry you through as it does for so many of us. Blessings and prayers for all the best, Mary

[Mary Geissler]

HI — I was diagnosed spring of 2021, after noticing I could do literally nothing without becoming totally out of breath. It was a sudden change for me, as I had been, even at 73, quite active. I have no other health issues, so this was huge change for me. I sat around and babied myself from May-July. My Pulmonary dr said he was recommending me for this three month program at a local hospital. I had NO idea what is was, but was naive enough to assume it was something that would reverse my condition! That idea was corrected almost immediately. The therapist was a registered nurse in Pulmonary Therapy and she ‘educated’ me with appropriate handouts and good discussions about my condition. We started out slowly, – treadmill, elypical, weights, recumbent bike, and my oxygen was plugged into the hospital source at all times. My heart rate and oxygen levels were checked constantly and recorded and they remained good. I hated exercise all my life – avoided it – I am not overweight at all, but I preferred to just do very active things instead. So this was a big change for me. At first I was very tired after getting home from the one-hour session. However, I began to feel better –  so much better – I noticed within a couple weeks I had a lot more stamina. I was able to finish some of my garden projects I had let go for three months! I didn’t need naps unless I really worked hard! The more I exercised, the more of my life I got back. It was psychologically beneficial for me to have an interested medical person pay close attention to me – I could ask her things and she was very honest. She said I was one of the better candidates to ever complete her classes – I never quit – I kept setting the bar a tiny bit higher each time. When my last session rolled around, I cried. I didn’t want to leave but I know others are waiting to get into such a program. I wondered if I would keep it up or get lazy again. The good news is: I work harder than ever. I have a nice sized Nordic Trak that doesn’t take up a lot of room. I am now well over a mile a day and I do not miss. I do push ups and have other equipment I can use. One thing that profoundly shocked me: I could not do any exercises that created any sort of pressure on my lower abdomen! I didn’t know why some days I felt just lousy for the next day or weekend. Like leg presses: putting your feet up against a metal plate and pushing. Just getting my feet up to the plate, and scrunching down my stomach to do so, resulted in me feeling sick for the next day. I reported this to my therapist who said she’d not heard that, but since that time, I’ve read that pressure on diaphragm does result in much discomfort for IPF patients.  I cannot bend over very well either – so now my go-to shoes for everywhere but dressy occasions are KIZIKS! Slip on and off without having to bend and tie laces! I can do any exercise if it doesn’t put any pressure on my lower abdomen – diaphragm – but walking is the best thing I do. I also set the machine at an incline – I cannot set it steep, maybe never will be able to, but I can set it a notch or two higher for the bulk of my time and not feel discomfort. I also have to say I have a nice tv mounted above my head so Netflix series programs keep me so engrossed in plots I FORGET how long I have been on machine. I always use oxygen from my big container, – if outside, I have a backpack if I need it. I wanted to join a yoga class but read that some of the positions put a great deal of pressure on the area that causes me so much discomfort. So I will have to see about that. I strongly encourage anyone to enroll in the program and just see if you don’t begin to feel like you get so much of your old life back this disease tried to take. Not havin’ it.

[Mary Geissler]

So sorry you have had these feelings. My mother passed from IPF and at 73, I was just diagnosed in May after having excellent health most all my life. I just got so sick with what I thought was bronchitis that left me exhausted and short of breath for two months. I am not on meds …yet…but I did enroll in the Pulmonary Rehab program through my pulmonologist at local hospital. I do an hour twice/week of workouts on machines and treadmill. I lift weights and someone is there to monitor my Oxy and heart rate. I can’t tell you how much these classes, which last three months, have done to improve my overall stamina and ability to regain so much lost strength and muscle. I love the challenge of working a little bit harder each time, tiny increments, but I feel so much better than I did. I usually do not share with anyone about my diagnosis – except my sister and daughter, and of course hubby. Because I look the same as always, no one guesses, unless they happen to hear me cough. I have always been super private but you sound more social. I think unless we really LOOK sick and frail, our friends/family just can’t wrap their heads around it. I am going to find a yoga class after my rehab is done. I know these are not cures, but staying as fit as I can has already given me back so much that I thought was lost forever. Please keep in touch in the forum – great, compassionate people here at all stages of this disease. Are there any clinical trials near you that you could maybe take part in? Don’t quit exploring options that will help you feel good and improve your outlook at times when you are feeling low. Blessings – Mary

 

[Mary Geissler]

Before my diagnosis this summer, I initially came in with a cough that got to the point where my entire body ached and I threw up. My regular dr was out, but a D.O. came in and heard me – she said to try over-the-counter allergy medication. I thought it was worth a try – so I bought Allergen and Flonase nasal spray. My life became worth living again – I really have no idea how progressed my IPF is today, but I can finally control my coughing. Maybe this is just the honeymoon phase, but it has made me feel nearly normal. I can still cough, get up phlem, but it’s not killing me and my diaphragm and it subsides nicely. I only use my back-pack oxygen when outdoors doing strenuous things. I have a watch that tells me my oxygen levels. I enrolled in a pulmonary rehab program for three months and it has made me so strong and much better able to do the things I could always do. I lift weights, use treadmill, bike and learn to improve my core muscles. I am 73 and hated exercise all my life – not overweight, but just hated to do the work! Now, so glad I stuck with this program and a therapist who makes me work a little! I had my dr send all my medical reports to the U of Minnesota for possible clinical trial participation. Even if it doesn’t help me, I can maybe contribute to someone else down the road with this disease.

[Mary Geissler]

Very touching to read of your journey. Thank you.

Mary