It has been 3 years since Randy, my husband, received the last minute gift of a double lung transplant. Randy had been on life support for almost 2 weeks, and time was running out. His lungs had failed, but no one really knew why (after the transplant at UT Southwestern Transplant Center it was determined that Randy had Idiopathic Pulmonary Fibrosis). The past 3 years, post transplant, have been full. Full of fear, sorrow, hope, joy, and relief. I think we have run the gamut of emotion, and it has been a true roller coaster. The last year has been much more tranquil, though, for which we are grateful. Both of our children married in 2015 and we have welcomed two new family members! Looking back, I want to reprint my post from September 10, 2013, reminding us all that Miracles do Happen! [Read more…] about Randy is 3 Years Post Double Lung Transplant and Doing Well!
Transplant Challenges
I never thought that Randy’s lung transplant would be easy, or that there wouldn’t be health issues afterward. One tries to stay prepared, but there really is not a way to do that. Randy and I were looking forward to a healthy, happy year, but as I have often said, the unexpected is the norm in Transplant World.
Walking into the new UT Southwestern Clement’s University Hospital I felt a sense of deja vu. It’s a new building…state of the art, beautiful, and contemporary compared to the old St. Paul’s building where Randy had his transplant, and where we spent so many days, weeks and months, but somehow it seems very familiar.
Randy has contracted a virus, known as CMV (Cetomegalovirus). It is not uncommon in solid organ transplant patients, and most take an antiviral medication to prevent CMV. Cytomegalovirus is related to the viruses that cause chickenpox, herpes simplex and mononucleosis. Once infected with CMV, the virus remains in the body, but it’s not always active. CMV may go through periods during which it lies dormant and then reactivates. If you’re healthy, it mainly stays dormant. Most adults have antibodies for CMV, up to 85% have had CMV as a kid. There is no worry of contracting the virus except through exposure to body fluids, not by casual contact.
Randy’s medication was reduced 3 weeks ago, and a week later he was experiencing fever and chills. If you follow this blog you know that after 4 or 5 days of this, Randy went to the clinic and had tests done. He showed no virus at that time, and his lungs were, and still are, clear. It was a week later that the doctors decided to put him in the hospital for more tests. They’ve checked him for everything, and so far, the only problem is CMV. But CMV can be a big problem.
He was started on a treatment the other night, and once again, last night. We have been told that it can take a few treatments before results begin to show, but after the first treatment, Randy’s viral count more than doubled. The doctor is “nervous”, and if she is nervous, I am very concerned. They have sent off a viral sample to Mayo in order to see if Randy is resistant to the medication. If he is, they will need to change treatment. The important thing is to get this virus under control so it doesn’t damage his organs. In the meantime, he continues to run fevers.
We will have the results of the test from Mayo tomorrow. Fingers crossed he is not resistant. In the meantime, it is best that no one but family visit him. His immune system is so cratered that he is extremely vulnerable right now.
For my part, I am going to have to take better care of myself. Stay hydrated, get exercise. I want to go to yoga…but I cannot go to a studio, who knows what bacterias I could pick up? I will need to stay away from public places and environments prone to bacteria of any kind. I need to eat healthy and not give in to the impulse to just grab whatever junk is available.
Tomorrow will find me with Randy at the hospital. I will keep the blog up to date. Prayers and positive energy are welcome!
Fabulous Photos Friday: June 13, 1981
June is the month of weddings, and ours occurred 33 years ago today! I cannot believe it has gone by so quickly. And…tonight is a full moon, on Friday the 13th! It must be a good omen! The last few years have been tough ones, but Randy is recovering well from his double lung transplant which occurred 9 months ago, so we are looking forward to better, and healthier, times. If any lesson was learned from the events of the last couple of years, it was a lesson confirming something I already knew: you never know what can happen, so do the things you want to do, say the things you want to say, and do it and say it NOW.
Now is all you have.
As Ferris Bueller said, “Life moves pretty fast. If you don’t stop and look around once in a while, you could miss it.”
We were “set up” on a blind date by friends of my parents, Bob and Dottie Green, who were Randy’s aunt and uncle! We were such babies, I was 20 and Randy was 23.
Ah, we had the most beautiful and romantic wedding! We are at 33 years, and we plan to make it to 50, 60, or 70 years!
9 Months Post Transplant and the Roller Coaster Ride Continues
In September, 2013, my husband, Randy, had a double lung transplant. The crisis happened quickly, and was certainly not anticipated by anyone. The events were severely debilitating for Randy, who was on life support (ECMO, Extracorporeal Membrane Oxygenation, and a Ventilator), not only physically, but emotionally as well. My two children, their significant others, and family friends gathered to support us, and that support was an absolute blessing. We are all so lucky to have Randy with us, but the simple truth is, life has changed for him, for us, for our family. It isn’t always easy to deal with. (I blogged about the entire experience under the category, Transplant. An Unexpected Journey). The roller coaster ride we have been on continues. It is simple fact that of all transplant outcomes, lung transplants have the least encouraging survival rates. After a lung transplant, the survival rate at 1 month is 95%, at 1 year it is 82.7%, and at 3 years it is 63%. The 5 year survival rate hovers around 50%. Why? Because the lungs are the only organ open to the air. Any germ, bacteria, irritant, pollutant enters the body through the lungs. Because the lungs are so vulnerable, thinking about the consequences of any given activity is a must.
We were able to attend the engagement party of close friends two weeks ago, and it was so exciting to actually be at a party, a social event! The party was outdoors, which made it less dangerous as far as picking up infections, etc, and we had a lovely time. Everyone was just so happy to see Randy! Last night, we were unable to go to the first birthday party for Bodie, the grandson of dear friends, because of the number of children who would be there, and apparently there has been a serious illness making the rounds at the local schools. Randy has been experiencing a few symptoms this last week, so we decided it would be best if neither of us exposed ourselves to anything else. That is just a small example of the changes in our lives.
I have been relentlessly positive about Randy’s outcome. There are people who make it to 10 and 20 years post lung transplant, and I believe Randy will be one of them. I wouldn’t be human if I didn’t worry, or if sometimes I catch my breath in fear. I do. Obviously, the life we had planned to live has been replaced by uncertainty. We love to travel and dive and hand glide and snorkel….some of this will be changed forever. I plan to take my dive trips, diving is truly my passion, and we are starting to travel a bit within the US. Next week we are off to San Antonio to enjoy a week at a home overlooking the city, traveling to New Braunfels ( a small German town known for its Octoberfests), and Fredericksburg (known for it’s quaint streets and art scene). I am a little nervous. When considering travel, we have to think about how quickly he could be seen by a lung transplant team, not just a doctor. Randy’s medications and ongoing treatment make it dangerous to be treated by anyone who doesn’t have some knowledge of transplants. San Antonio has a lung transplant team at the University of Texas Health partner, University Transplant Center. I’ve been in touch with our transplant clinic about the trip, and I’m sure everything will be fine, but this is Randy’s first trip away from home since the surgery. I imagine we will pay a visit to the Alamo, and most certainly the famous River Walk. Next month we are headed up Highway 1 (or 101?) in California from Los Angeles to Santa Barbara, to Big Sur, Carmel and Monterey, San Francisco, then a week in Shelter Cove. After, we head to Lake Tahoe for a week. Shelter Cove has air ambulances, and so does Tahoe. I’ve already checked.
Randy is doing very well, he is starting to build up strength and muscle, and his attitude is quite good. He is down to a fairly low dose of prednisone, the drug our transplant team calls, “the asshole drug”. Ha ha. At 9 months post, he is in pretty good shape after everything he has been through!
Randy’s Recovery Continues!
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!
Rejection Episode
February 16, 9a.m.: yesterday Randy received a call from Dr. Fernando Torres’ office (he is the Head of the Transplant Department at UT Southwestern) and was advised that the tissue biopsy from the bronchoscopy performed on Friday showed possible rejection. The visual portion of the bronch looked great, but the biopsy tells another story. Rejection of the transplanted organ is not exactly music to our ears, however, most lung transplant patients experience at least one episode of rejection, especially during the first 6-12 months. It does not mean that the lungs won’t work, or will be rejected, when caught early, most episodes are dealt with expeditiously.
Randy is at UT Southwestern University Hospital where he will be treated with Solu-Medrol, a very strong prednisone. I read the orders last night and they said he would have 3 treatments a day for 3 days; of course the nurses don’t know what the protocol is supposed to be. So far this morning, Randy has not yet seen Dr Torres.
We have to expect bumps in the road. As I said, the majority of transplantees have episodes of rejection. We have to be as positive in our outlook as possible, and he will be home in 3 days, back on schedule with his Pulmonary Therapy. Life is, at best, unpredictable, and we have to go with the flow.
Facebook groups of lung transplantees have been wonderful…they are such great support. They’ve all been here, so it is good to have people who have had these experiences to discuss things with. I’ve talked to several people this morning who have had one or two episodes with rejection and they are all doing fine. As I said, it is not at all uncommon.
It is now 1015a.m. and still no doctor. I’m going to head to the hospital. THINK POSITIVELY, OPTIMISTICALLY! I know it will be okay.