[HerbC]

I was diagnosed with IPF in 2016. At that time my symptoms were mild and tolerable. I  never even considered a lung transplant.  Since then my lung function has steadily declined. I was placed on OFEV in 2019. Currently I’m utilizing oxygen when I move about.

On October 11, 2021 I was placed on the lung transplant list at 73 years old. Now, I realize that my only hope for  somewhat of “normal life” is a transplant. Yes, I’m apprehensive about the procedure and fully understand the risks. I know the post transplant won’t be easy. I have a good home support team and I have faith in the transplant facility and transplant staff. Without the transplant what degree of quality of life will I enjoy?  I’m currently in pulmonary rehab  getting into the best physical condition pre-transplant.

I’m prayerful and feel that I’m making the right decision for me.

Herb

[HerbC]

I’m currently of the lung transplant list and my lung transplant surgeon suggested I enroll in a cardio pulmonary rehab  program at the hospital. He stated that the better condition you’re in helps with the recovery after transplant. It’s been a little over a month since I started the program and I can defiantly feel the difference. My o2 levels have increased when stationary without oxygen. I still use a concentrator when moving around home and a portable unit when out and about. I started slowly with the elliptical, treadmill, table top arm circler and weights. Now I’ve been able to increase  my endurance and work load for an hour twice a week. The nurses and respiratory therapist are constantly monitoring: blood pressure, o2 levels and heart rate throughout the workout. I look forward to my sessions each week.

[HerbC]

I’m 72.5 years old. Just today I met with the doctor who is the head of  lung transplant department at the University of Chicago Hospital IPF Institute. I was informed based on testing and my excellent  physical health that I would be a candidate for a transplant despite my age. U of C  Hospital has an absolute cut off age of 74 years based upon the current health of the transplant  recipient. I have under gone 37 different blood draws for risk factors (37 vials of blood) and over 25 different cat, heart scans, numerous x-rays, bone density, swallow, gastric, colonoscopy, endoscopy , dental exams, pft  etc. I can’t say enough regarding the staff at U of C Hospital. They are first class. Four months ago when I began testing the center  assigned (I have met individually with each) my transplant nurse coordinator, nutritionist, pharmacist, social worker, transplant surgeon, nurse practitioner and the Pulmonologist ( who has followed me since being diagnosed with IPF about  4 years ago).  Last week I met with the head of the surgical transplant team to go over transplant procedures and to answer any questions I had regarding the transplant. At each of the meetings with the doctors I had to have my at home post transplant team present. Still there are 2 more test they want to run. Tomorrow I have an appointment with the dermatologist.  I will receive the final determination after the transplant team has met to fully discuss my case and hopefully being placed on the transplant list in about a month. I’m encouraged hoping for the best. I’ll keep every one up to date.

Herb C

[HerbC]

Hello Pete,

I carry a small zip lock bag with me and when I remove the cannula I simply place the hose in side the bag while still attached to the unit.

Herb C

[HerbC]

I was diagnosed with  IPF 4 years ago. When I first get up in the morning I start coughing with mucus. I never cough when laying in bed. I do use 2 liters of oxygen at night. To relieve my coughing in the morning I take a 24 hour Claritin (loratadine) and a generic Allergy spray (Fluticasone Propionate) into each nostril.  That stops my coughing for most of the day. During the day to relieve a coughing spell (usually when I become winded) I place (believe it or not) a piece of “fireball” candy in my mouth and it stops the cough! Yes it burns but it does the trick.

Herb