For those who do not know, I will recap: in August, my spouse, Randy suffered a respiratory issue, they diagnosed pneumonia, but it did not clear up after several days. He had 30% lung capacity at that time, and when steroids did not help, testing began in order to see if he could qualify for the Lung Transplant List. He did qualify, and he remained in the ICU, unable to get up or move around because of lack of oxygen. We were waiting for lungs. On August 29, he suffered respiratory failure, and was put on a machine, ECMO, which acted as his lungs (lung capacity was down to 2%, one cannot survive at that level) and a ventilator. He was maintained by an incredible team of doctors and nurses at UT Southwestern Heart and Lung ICU and kept unconscious for almost two weeks before lungs became available. He is very lucky to be alive, and we are all so grateful he is still with us! I have blogged about this Unexpected Journey from the beginning.
Here we are, 7 months after surgery. It has been tough, I cannot deny it. Randy was so atrophied from months in bed he could not walk. He is still doing therapy, although he is finally free of the wheelchair and the walker. He is able to drive, and he continues to work on his strength, which is nowhere near what it was last July. The nurses told us that for every day in bed, it takes 3 to recover. Randy still has work to do to get back to a “normal” life.
Recovery is not easy on the patient, or the family, and especially not for the caretaker. There have been many frustrations along the way, and Randy continues to get frustrated and angry pretty quickly. The drugs have a lot to do with that, and we need to just accept it, because Randy will have to take these medications for the rest of his life. I think we are here, on the precipice of understanding that life is, and will continue to be, different. There are so many drugs to take, for suppression of the immune system, for inflammation, for his tummy, blah blah blah. I didn’t know that someone could take all of that medication! There are certainly potential side effects, so we have to keep on our toes and watch his numbers carefully. What numbers you may ask? Well, he has to take his blood pressure and temp every day (all of this must be logged, of course), check his sugar and inject insulin (the medication has made him diabetic for now, we are hoping this will go away eventually), and he has to take his spirometry numbers. What is spirometry you ask? It is a test performed with an instrument called a spirometer. It is used twice daily to check how well one’s lungs are working once one is being treated for a chronic lung condition. Spirometry measures how much air you can inhale and exhale. Spirometry also measures how fast you can exhale. Spirometry values below average indicate your lungs aren’t working as well as they should. Falling spirometry numbers are what alerted us a month ago that he was in rejection, and he spent time in the hospital as they tweaked his medication. The situation resolved quickly. Whew!
So…we have to be flexible, because our lives are now unpredictable and fluid, and dependent upon Randy’s continued progress. I continue to be positive about all of this, after all, some people who have had transplants are at 10 or even 20 years plus! I’ve decided Randy is going to be one of those people. There have been difficulties, but we will get through them. We still intend to do some traveling, though he cannot travel out of the USA yet, there are places to enjoy in the good old USA which are not too far from major medical centers. I have taken two trips since the New Year, and it has been positive for both of us to get some separation, and just relax a bit. We have some reservations for trips coming up, one in San Antonio (5 hours away), and a trip to Lake Tahoe in the summer. That one is a bit of a concern because of the altitude. We’ll just play it by ear.
Life can really turn you upside down and all around, can’t it? We never thought Randy would get sick…or become ill so young! He’s only 57. We have been handed these circumstances, so we have to make the very best of them. Today we discovered he is not digesting his food well, and so he is on another medication. He also needs to lose more weight, and we all know I do! They suggested a low carb diet, so tomorrow I am headed to a place called My Fit Foods and have meal plans drawn up for us to begin a low carb regimen. Maybe this will get some weight off…I gained almost 15 pounds through this ordeal! Honestly, I was slim for most of my life, so why can’t I be one of these people who lose weight when stressed? No, I have to gain it. Grrrr. Well, I’m hoping the low carb will turn it around. We will do it together.
So, life is good. There are ups and downs, but all in all, I’d say we are a pretty damn lucky family. It is time for something great to happen now, and we are ready. Let the good times roll!
Most people have no idea how difficult recovery is for a transplant patient and their family. Thank you for sharing your story. I know you love international travel but the USA had a lot to offer in many places you would never think of. I hope you both get to explore those places.
We will, and I will continue my dive and volunteerism trips. Next up: Ecuador in September to photograph Manta Rays for ID! The recovery has been tough on all of us, but I’m looking to better days ahead! Thanks, Kris!
Tammy, Thank You for the update on Randy. Wow, I can’t believe it’s already been 7 months post op. Happy to read about your travels and the many awesome locations your life takes you.
I visited with Dr. F. Torres on 03-28-14 to discuss Lung Transplant options again…Oh what a journey that lies ahead for me/us. I’ve been fighting my Lung situation for 7 years and WE all think it’s time.
Keep us posted and continued positive days moving forward for Randy and the family.
Will you be on the transplant list? I hope you will. I wish for you deep breaths and sunny days, Joe. You’ve been a real support!
Hi Tam! Thank you for the update on your husband. I’m so glad to hear that he is hanging in there and making progress. I’m sure it isn’t easy for either of you but you do have each other and many, many good years ahead. As you say, it’s all part of the journey….
Exactly right. Just a couple of alterations, no biggie!
One day at a time, one minute at a time—–thanks for the update Tammy. Smooch to you and your family.
Juetta
Smoochy back to you and Doug. Have a great time in our home town!
Thank you for sharing your inspiring story. It’s hard to know just what to say. I admire your strength and the strength of your family. Life has thrown you a huge curve ball. Keep spreading the sunshine like you do even when the day may feel a bit cloudy. Cheers to you!
Thank you, Suzanne. One thing I know, life is one hell of a pitcher…you never know what is coming at you! Cheers to you as well!
So glad Randy is progressing Tam!
Renee Goldberg
Thank you, Renee. Me too! One foot in front of the other….
Wow! You guys have been through it this past year. It sounds like you have the perfect outlook and attitude to weather any storm though. I hope things settle down and you have smooth sailing for a while now. Blessings to you and your beautiful family. Take care, Joy
It has been a tough year, it really has. My mom passed away last June, and her memorial was supposed to be in Dayton that September. Obviously we had to cancel it. I’m trying to reschedule now…hope she’s not too mad at me! Thanks for you supportive words, Joy. And of course I remember you, we went to grade school, jr high, and high school together!
What a wonderful outlook you have. I have Rheumatoid Arthritis and am also a 24/7 caregiver for my mom who has Alzheimer’s. So I understand where your coming from. I take 19 pills a day plus IV infusions and I also know about the toll caregiving takes on you physically, mentally and spiritually. I hope things go smoother for you finally. Congratulations on the photo shoot sounds wonderful!
I hope you get breaks Rena. I think it is so important to get away once in a while. I have several physical issues as well, so I know what you mean. It is exhausting. I cannot imagine doing what you are doing though. It must be emotionally devastating. I hope you have siblings who help!
Good luck on your travels. I don’t think the altitude of Lake Tahoe should be a problem. I was able to go into higher altitudes (i.e. West Yellowstone) within a few months post tx with no problem. I’m almost 2 years out now and went to the high country archery hunting for elk last fall. It was wonderful to be in the mountains again!
Oh,thank you for telling me that! I will let Randy know!
If all continues on schedule, I will reach the Big 6 Oh in 2 weeks. My husband reached it last year. He’s a pulmonary doc, so for years he had taken care of some very sick people. It now seems that every week, we hear of someone else we know who has been diagnosed with a life threatening disease. Some of them are in their 20’s. We both sort of feel that the rest of our lives is gravy, to be savored. Carpe Diem, Baby. I’m glad to hear that you and Randy have been granted some gravy time.
Thank you, Suzanne. I am as well. Randy was misdiagnosed with sarcoid and told it would probably clear up on its own…it is sheer luck and miracle that he crashed in the USA and everything went the way it did. Gravy time is right.
So wonderful that you see the positives from this trial. Thank you for sharing with us!
Thank you for your comment, I appreciate it!
Thanks for sharing your story. Looks like you and Randy have a great “back-up group” — wishing you many more years of happiness together~
Thank you! I appreciate that, and I plan that we will!