I am so proud of my husband, the father of 3 daughters, 2 son-laws; 6 grandchildren. I called UCLA last week for advise on their earlier message that "Bob was approved for the program but not listed on UNOS"' Tomorrow he completes the Resp. Therapy program. So where do we go from here? Their answer is that Bob, who can barely breath must lose 30 lbs. He has already lost 33 lbs; his BMI must be 30. No exceptions. He is on 4ltr of Oxygen at rest and has 29% lung capacity. We understand that and I wanted to know if there would a time when his weight would not matter. The answer was no. UCLA states that there would be a 13 inch incision under his armpit. Infection would kill him. So I asked if we should contact Cedars Sinai or the Cleveland Clinic and their opinion was that they would probably say the same thing. I tried to explain that this is not our first rodeo and Bob is really strong, as we all know. So today Bob decided that he is going to try and lose the weight. Check out the picture with our caregiver. Bob is fighting for his life. Thank you for all your prayers. I hope they will work.
I forget to mention that we have been at UCLA since November 2012. It may not seem like a long time but for my husband Bob it certainly is. He is a strong man that wants to breath. I really do not think that is asking too much. I also wanted to mention that Dr Castro also was on the team that replaced his Tricuspid Valve and should be applauded for his knowledge. We keep pushing forward and hope we will have the opportunity to express how thankful we are for everything everyone has done for us. We love Bob. We want him to enjoy his time with us.
Well the Bob and JoAnn Show continues although it has been 6 months since my last update. Bob is diagnosed with a type of Pulmonary Fibrosis at UCLA though UCLA sounded hesitant about HP, In my opinion.. We are completing the evaluation for a single side lung transplant. We were at UCLA on July 3, for visits with the surgeon, social worker and a psychiatrist doctor. The first meeting did not go well for us. It was with the surgeon. His credentials were impressive. However, we had to park a quarter of a mile from his office. I am recovering from foot surgery. it was impossible for Bob to walk that far. We used his scooter. instead of asking Bob "how often do you use your scooter?" he said and I quote "we do not do transplants for people in wheelchairs" That is the exact words. He dismissed me when I said it was a scooter, I tried to explain we had to park pretty far away and I clearly had pins in my foot. He asked if we had any questions and we both said no. I was teary eyed and Bob and I got up and left. First Bob has had his chest opened twice by a Thoracic surgeon, so we know what to expect. Second if he did not want to "take Bob on" just say so. Do not beat around the bush. The social worker was very professional and sympathetic. She advised us that she is included in the "Listing" meetings. Once you are approved for a transplant the hospital calls it "Listed". The psychiatrist seemed to think he knew Bob better after a 1/2 hour meeting than his owned GP of 20 years. So now we wait for the results of the meeting they will have in the next few weeks. I know we should be on a lung transplant blog but this area seems like home to us and Bob heart is grossly enlarged. He is on 4L of oxygen 24/7.
He is thinking that this might be his time..........Until we have more news. Fair winds and calm seas.........Bob is now 67 years old.
Since our last update we continued the blood draws until August still in our RV. We started looking for homes literally hundreds on line and physically in CA, AZ and New York (where our daughters live). We have not been home in 14 months; living in our RV which we are grateful we had. Finally we would find our home, La Quinta, CA. Our daughters & son-in-law flew out to help us move from Northern California (the Sierra, 5,000ft) to the desert now known as the "Cove". Along with what I would call many good close friends the movers arrived and our "stuff" went into storage. Whew! Then disaster. Bob developed a terrible cough (he stayed with our daughter in RV during move) it continued to get worse, after several days I drove him 90 miles to ER at Hoag Hospital in Newport Beach. The news was not good. He had respiratory failure & was very sick. Transferred to critical care with pneumonia & placed on a ventilator. The infectious disease doc ruled out all possible infection. The diagnosis was viral pneumonia. I was told his chances of survival were poor. I called our daughters who called our niece & they flew to Orange County immediately. He was taking 1000mg of prednisone, propofol, fentanyl & antibiotics IV. He develops a small hole in his lung which was tubed. Very critically ill. We told him we loved him & the doctors suggested they try to ween him off the meds & ventilator. We watched and prayed, Bob came around & he dodged another bullet. He was in the hospital for 11 days & now we are on another journey. We have moved & it is so much better for Bob (& me). There is some concern about his tricuspid valve regurgitating (slight) but he has RHF. 10 days ago we met with the Director of Heart/Lung transplant program at UCLA. Bob medical history is very complicated. He was not looking forward to having his chest opened a third time, but his time is limited. The pulmonary fibrosis is progressing & he is on oxygen 100%, sleep apnea is our enemy, the equipment is difficult for him to wear, reminds him of Vietnam for some reason. He describes his stay in hospital like floating underwater, blue and he has some crazy hallucinations
about his experience. The doctor's are on the cutting edge at UCLA & they are thinking perhaps they might be able to preform a single side transplant from under his armpit, like the lung biopsy last November. We are thankful for the doctors at Hoag, they saved his life. He is a fighter but he hates being a hostage & if UCLA reviews and approves Bob for the program he would take the chance. I love my husband very much and I am very proud of him. He really is a good husband, father, friend and man.
Our journey is long but the Bob & Jo Ann Show continues. 2011 was a very long frustrating year. Bob's health declined most of the year. The medical services in our area declined too. In June 2011 Bob was diagnosed with Pulmonary Fibrosis & endured another broken ankle in July 2011. We decided to move to our RV, September 1, 2011, (we r grateful to have this option) to seek medical care in San Francisco Bay area. After 9 months of doctors & surgeons, including a November 2011 lung biopsy, a single side lung transplant denied due to weight, previous medical conditions & current health issue, a heart cauterization & TEE on the same day in March 2012. Pulmonary Rehab for 8 weeks, a oxygen concentrator & full-time oxygen we arrived in Southern California at our "OLD" primary care giver for an annual check-up. Blood lab was shocked to discover Bob Red Blood Cell count was double than a man of his chemistry should be. Referred to a Hematologist & Oncologist. Whew! Perhaps Polycythemia Vera. No not Vera. Whew!!!
He received is first blood removal treatment. The lab test ruled out cancer, although one groin lymph node is enlarged & on watch, cancer is not diagnosed & a bone marrow biopsy isn't warranted. Bob has too many red blood cell because his kidneys believe he is oxygen deprived, which he is but has congestion on the artery freeway resulting in limited oxygenated red blood cell arriving to lungs, heart & brain. The treatment is similar to giving blood only bigger needle & more blood. We have 2nd treatment on Monday. Sorry for being away so long. I love my husband & very proud of him.
Bob continues with cardio rehab 3 x's/weekly and is making progress. He is getting around better, both of us look forward to summer. Had snow again last night, but it will not last long. We are very fortunate to have 3 children & six grandchildren that want to take care of us.
Bob's progress is slow but steady. Phone calls;emails & cards keep Bob in touch with everyone. I can not express how much it helps in healing. Bob loves his family & freinds, they contribute to his recovery as much as cardio rehab 3 x's/wkly!
It is 6 month's since surg & approx 3 months in cardio., He is tired after cardio, & continues on. I will update his progress. Afterall it is the journey and not the destination that all of us are on.
By the 2nd post-op day the chest tube & Foley were discontinud. Pulmonary issues were continued by Dr. Sigal Tene, starting woth steriods. Bob made slow & steady but continued progress. Bob had postnasal drip and cough, CT of sinus cavity revealed sinusitis. Septra & Clindamycin was administered & continued for 3 6 weeks after discharge.
Over the next several days Bob underwent routine diuresis, weight was brought below preop weight. Bob began to walk and get out of bed. Pain was well managed & with no complications he was ready to be discharged on the seventh postop day!
Bob would follow up with Dr. Waters in 10 days & return to see the A-Team in one month.
Dr Waters is Bob's cardioligist in Stockton, California (St Joseph's Medical Center) who referred Bob to Dr Gaudiani, in Redwwod City, California.
The next week was busy with doctors & nurses. Leigh, our youngest daughter was with us, along with Bob's Vietnam friend Mike Galvin & his wife (yes bob did 2 tours of Vietnam). Bob was in alot of expected pain from the incision. He had a tough week.
The nurses & doctors were dedicated and professional.
There was no sign of neurologic deficit; surgical bleeding or INFECTION!
Thank you Sequoia Hospital!
By the second day Bob was transfered to the cardiac surveillance unit.
We now understand ALL the complications and can never thank the A-Team enough.
It was a long day for everyone, After several long hours Dr. Castro spoke to us explainingthe entire procedure. Some of the information did not make alot of sense to us, but we knew that Bob survived the operation & it was all that mattered.
Earlier Bob was anxious because he experienced the 1981 operation, he knew what to expect when he woke-up. Approximately 4:00AM October 17, 2009 Bob woke up and he was doing as well as expected.
There are no words that can explain our happiness. Right now he needed rest to heal.
Without the history & operative reports I would not be able to write a detailed report about the last 3 days, our drama is not included and I wrote the facts. My husband is our hero, he was determined to survive the operation & get on with our lives; We have 6 grandchildren that need and love him.
October 16 2009, Bob op was performed through a redo sternotomy complicated by injury to innominate vein, which was plicated to the sterrnal wall from previous thymectomy repaired by a patch of autologous pericardium.
The remaining heart structures were dissected, on cardiopulmonary bypass using bi-caval cannulation, his atrium was opened revealing a severely deformed & grossly perforated tricuspid valve leaflet involving the majority of the septal leaflet destroyed of all chordal structures. Doctor's could not salvage the valve, it was relaced by a 33-mm Medtronic Mosaic porcine valve. Do to risk of heart blockage they also placed a left ventricular screw-on type lead along the inferior base of left ventricle to eliminate the possibility of a transvenous RC pacing lead through the tricuspid valve.
Bob came off bypass on minimal support.
With his 3 daughters at our side we check into Sequoia Hospital. Bob was ready, he wanted to live but not under his medical health problems. After a complete pre-op which included Sigal Tene, DR. the Pulmonary doctor from Sequoia Hospital for recently diagnosed pulmonary fibrosis.
We left the hospital and waited for morning, October 16, 2009.
I know Bob is here today because of our dear friend John Courtney. He put us in contact with Charles Franc, a Cardiovascular Consultant who referred Dr Vincent Gaudiana at Sequoia Hospital, Redwood City California. In additional to my opening story, Bob (age 63) had a history myasthenia gravis (1981),underwent a thyroidectomy through a median sternotomy. This required a redo sternotomy complictaed by injury to the innominate vein from 1981 surgery.