Jim’s first day out of the hospital has been going very well. The home health nurse came by and gave Jim his IV. But the eating has been amazing today:
Jim even got his exercise by going out and getting the food himself which was pretty challenging.
I am so happy and excited to be home right now, more than even when I got out after the lung transplant. I made it through the first big test after the transplant and I’m still alive! That feels really great…and the shower was pretty good too.
Thank you to everyone who has kept me in their thoughts and prayers over the last two weeks. I am so lucky to have such amazing family, friends, and colleagues who are always there with encouragement during the ups and downs.
Jim was released from the hospital tonight and is back at home. Since 1996, Jim has dodged one bullet after another and there have been lots of bullets. He is a very brave person.
The home health care will begin tomorrow and the drugs were delivered today that will be infused.
I hope Jim can get some rest and his body can heal after this latest ordeal.
Sleep well, Jim. I love you.
The infectious disease doctor was explaining that CMV is generally found in solid organs (like lungs) and that valcyte (the drug jim has been taking orally) works on blood CMV and ganciclovir works on tissue CMV. He also said that lung transplant patients use to get a year of ganciclovir to deal with the CMV in the tissue. Jim has consistently been CMV negative in his blood tests but there is circumstantial evidence that CMV was present in cecum even though the stains have not yet confirmed it. The doctors have also taken Jim off of one of his three immunosuppression drugs because they think it may be causing GI problems. Jim is currently on a three week course of ganciclovir which he has been taking for 12 days in the hospital. A home health care nurse will continue giving Jim the drug for the remainder of the three weeks, starting tomorrow.
Jim is suppose to be released today but …
Jim was just called by UCLA and told Blue Cross would not approve the home health care until Jim pays $1795. The UCLA person had no idea who Jim was suppose to pay. Jim’s insurance agent said that is illegal for Blue Cross to demand payments in this manner. Later Jim gets a call and is told that he will have to sign something that he is financially liable for the payments. Jim already signed such a document but they want another such document.
One other little fact about Jim’s policy. There is a maximum out of pocket limit of $4000 per year on his policy. This is suppose to be the maximum that he is required to pay each year. However, if Blue Cross denies a claim that that is added to the $4000. So, there is actually no maximum because Blue Cross will routinely deny claims for any reason they can think of. They have people who work for them that specialize in such denials. Sometimes if you fight then they might pay the claim, sometimes not. Sometimes you are just too sick to fight them. Blue Cross knows this. Ultimately, it becomes a battle between the insurance company, the providers, and the collection companies to see who pays for what.
We know all about how the system works. We know when they are asking things that are illegal. We are pretty sure that Blue Cross knows it is illegal as well but they don’t care so much. We have spent years navigating the system but think about all the people out there that doesn’t understand this.
Some have objected to my past comments about the nature of American health care, the outrageousness of Blue Cross, and even my political feelings about how we got into this mess. To those people, I apologize that I am making you feel uncomfortable or annoyed. The problem is we are so frustrated with the system and have been involved with it so long. When I hear politican like McBush saying that American has the “best health care in the world” I realize that he is either out of touch, doesn’t care, or sides with the greedy health insurance companies which are some of the most profitable companies on earth.
I have always avoided saying Fuck Blue Cross and the evil bastards that work there, Fuck the politicans who have let American health care get to such a low point, and Fuck anybody who thinks American health care is good or humane. I just won’t go there.
Dr. Ross came by a little while ago and confirmed that Jim would be leaving the hospital tomorrow. Jim still needs to complete a 3 week dose of antibiotics (currently on day 11) for likely CMV. Dr. Ross explained that pathology was not able to confirm CMV in the biopsy but it was still likely the cause. Jim will not be getting TPN (IV nutrition) at home. His blood will be monitor as well and Jim will have a follow-up colonoscopy in about a month to confirm the ulcer has healed. Dr. Ross felt that Jim would be able to thrive at home.
Jim just had his most daring lunch in a while: thick crust pizza and salad.
p.s. Goodbye George — we’ll miss you.
Jim got another unit of blood today because his hematocrit dropped — the doctors don’t think he is bleeding but there is no explanation for why Jim needed more blood. Jim is on a regular diet now and expects to be released from the hospital tomorrow.
Jim had soft foods last night for dinner and this morning for breakfast. He said everything went well and there was no discomfort. Jim will likely be released in the next few days. It will certainly be wonderful if Jim is able to eat without any problems when he is released — he has had problems with his digestion since the transplant and in the weeks prior to this hospital stay, the problems became quite severe. Meanwhile, Jim’s lungs keep working well.
Jim’s diet just got promoted to soft liquids and Dr. Ross feels confident that Jim will be released this week. I am taking today off from being with Jim at the hospital; however, if any of Jim’s friends want to visit Jim is in Room 510A. This week is your last opportunity to see the current UCLA medical center which was built in 1955. Next week the hospital moves across the street into new facilities which has been under construction for seven years.
Jim’s attending doctor just came in to brief Jim on his condition.
The pathology from the colonoscopy is pretty complicated and the doctors are still trying to understand it. They think that Jim has both a virus and a bacteria infection in his cecum. The likely virus is CMV but the “stain” is showing negative which the doctor explains doesn’t rule out a positive.
They already have a preliminary pathology reading but there will be continuing readings from higher up pathologists, likely even into next week. Jim takes a medicine to prevent CMV which, by the way, he acquired with the lung transplant. Not too surprising since 80% of the population has it. Most people deal with it with a healthy immune system but Jim is immosuppressed to prevent organ rejection.
Tonight Jim will be having a “clear” dinner — yummy! The doctors have been debating whether he should be on “clears” or not. I guess the “clear” camp won for now. The doctor said another CT scan will be required to assess how the inflammation is being reduce, but not until “sometime next week”.
Could it be any more complicated? Well, yes. A week from Sunday, June 29th, UCLA medical center moves across the street into a new facility — the whole place is changing on one day. The big question is will Jim still be in the hospital for the “big move”.
The Physical Therapist is taking Jim for his first walk since going into the hospital last Thursday. Jim is stable on his feet and walking without assistance. I hope this means that they are looking to release Jim soon. Still no word from the pathologist about the biopsies that were taken from Jim’s ulcer site in his colon yesterday.
The GI doctor who did the colonoscopy told Jim that all they know so far is that Jim has a gigantic bleeding ulcer — the largest they have ever seen. Samples were taken and sent to pathology. Also, the treatment that Jim is getting has stopped the bleeding and reduced the inflammation which are both good signs. Dr. Ross wanted the colonoscopy performed in order to get tissue samples so that he could understand the nature of the inflection for future prevention and treatment.
Jim is back from the colonoscopy — everything went well and he is alert and happy the procedure is over. The preliminary word is that Jim had a bleeding ulcer. The official word will take much longer but I wanted to give everybody a heads up with the little we know. Jim has some swelling in his arm, particularly his left arm — not sure what that is all about. Jim still hasn’t got the official word from the doctors but will post when we get that.
The doctors have decided to do a colonoscopy this afternoon on Jim, because Dr. Ross wants to know what caused the infection so that they can avoid this happening again. Dr. Ross assures Jim he has “a good guy” doing it. Also, Jim has been transferred to room 510A, can have visitors, and has some access to his phone. p.s. Colonoscopy has been scheduled for 3:45 pm today.
Ramin just finished seeing Jim and reported that Jim’s spirits are high and very positive. Jim will be moved to a regular room later today. The doctors are now doing his hematocrit blood draws every 12 hours instead of every 4 or 6 hours as they were doing — more good signs that Jim is healing from the infection and inflammation. Still no bloody stools and his red blood count is stable. There are no procedures scheduled right now, but Jim continues on the four antibiotics and the TPN feeding through the pic line. Jim is given a few of his meds orally but very little is going into his stomach at this point. Lots to be thankful about right now.
