Rockin' pneumonia and the boogie-woogie blues.....

Life has continued to be quiet and uneventful this month, except for Robert J's unfortunate cold that became pneumonia last week. We are pretty good at dealing with cardiac and vascular situations by now, but a simple cold was outside of my area of so-called expertise. After waiting the requisite week for it to go away, the cough just got worse, so finally a trip to his primary care doc and a chest x-ray explained the problem. Serious cough syrup and some antibiotics improved things within 24 hours, and our hero (and his other half) are happily sleeping through most of the night again, after too many hours lost to coughing in the last week.

In other news: At the risk of jinxing our delicate insurance situation, I will reveal that we are approaching a major milestone on Nov.1: that is when Medicare will become RJ's primary insurance, and his retiree insurance (what's left of it) will be secondary. This is huge, since our friendly financial rep from UCSF was quite certain that the primary insurance would not last until this date, after all the latest hospital bills from early summer. I spent several weeks in a pretty panicked state, looking for alternative coverage with little luck. Had the transplant happened this summer, the insurance would have run out for sure, so I have to look at all the delays as perhaps a good thing, in the big picture. Of course keeping him out of the hospital until the transplant will also be very helpful, and that is our daily goal. His insurance situation is one of the thousands that could and should be helped by health care reform, so national politics are especially personal for us! Fingers are crossed for all of us to see better options in the near future.

Long Time, No Blog

Sorry to ignore my blog for so long. Fact is as has been the case nothing to report. This means nothing bad too so it is definitely not all gloom and doom. I did visit the docs recently and it was the same story; stay well and keep your phone charged.

We met a very nice couple at the UCSF Support Group. He has had a heart-kidney transplant and is doing great. He has much the same health history as me; diabetes, dialysis, and of course heart issues. What he has that I don't is a 1989 Ferrari Testarossa that he allowed me to sit in at his house. They had invited us over to Pacifica for their annual block party which was quite nice.

In a couple of weeks I will be having a sleep study to determine why I am so tired all the time. I will stay overnight and be observed sleeping out in Walnut Creek. Sounds like a blast.

Had a great dinner in Sacto the other night to celebrate Andy's 29th BD. Leslie was able to join us and of course Linsey was there with her new jewelry. Plans are moving ahead on that as well so right now everyone seems content.

That about handles it for now


RJ/Bob/Irv

No Nooz

Nothing going on over on the transplant side. Most of our recent activity has involved the engagement of Linsey and Andy. We made a nice trip to Napa with all the Flukens to look at venues. Looks like they are leaning toward Napa Valley Country Club. Linz and her mom are already deep into this. I think it will be fun helping out with the arrangements.

Next weekend we are going to a BBQ at the home of a couple we met at the transplant group. He had very much the same situation as me; diabetes, kidney failure and heart disease. He has gotten his transplant and is doing great. He has been calling me for encouragement just like my revered father-in-law Bill Cook used to do for people when he had his liver transplant. Should be fun. And oh yeah I forgot to say he has a Ferrari.


All for now. Stay tuned.

Bob/Irv/RJ

An Engagement!

Last Friday evening Andy proposed to Linsey in the Rose Garden in McKinley Park in Sacramento. We are delighted to say the least. The news was shared with all the folks at the 60th birthday party Cherie and the kids arranged for me. I like the opportunity to share some happy news from time to time, not more of this dull medical stuff.

So until next time

Bob/Irv/ RJ

A happy guy in the Laguna Seca paddock

Despite the heat and challenges of walking the hilly path from the parking lot, RJ was very happy to be back at Laguna Seca for the first event in 5 years. The "handicap accessible" transportation leaves a lot to be desired, but it eventually got us back up the hill to our car.

Time Travels On

Once again I am pleased to report no adventures to share. All has been stable and well; no chest pain, no cardiac catheterization, no drama. Of course this also means no transplant. Other candidates are more needy at the moment. I am still listed as priority 1B but when Dr. McGlothlin saw my blood type she said "it's gonna be a while". It already has, but that is the way it is.

Cherie and I managed an outing we haven't done for 5 years; we went to a race. We went to the Monterey Historics and generally it worked out pretty well. My legs were a bit wobbly after walking down (?) a hill. But all went well and we enjoyed the day checking out the rare and significant racing cars on the track.

Andy's leg seems OK despite some pain and swelling. He will be taking blood thinners for some time which is a drag for the poor kid.

Sorry nothing monumental to report this time. Best to everyone and thanks for reading my blog.

Bob/Irv/RJ

Aug. 5 marks 1 year on The List ....and counting

We passed the 1 year anniversary of RJ officially making it onto the heart-kidney transplant list, never imagining we would still be waiting. It was already a pretty special date: the wedding anniversary of his parents (1945), and the anniversary of my dad's death (1993). So we are not likely to forget it's significance to this generation.

The good news, of course, is that there is no bad news. We have been exceedingly careful since the last hospital stays to keep RJ's diet lower than ever in sodium, potassium and fluids, since those seem to be the most dangerous factors in causing his congestive heart failure. He's doing fine at cardiac rehab classes again, and his only complaint is feeling very tired all the time - not depressed, but without energy. In the big picture, we'll settle for this scenario and skip the drama!

Son Andrew is doing much better. His leg pain is nearly gone, he's back to work, and just has to have regular lab work done as long as he is on the blood thinners, for the next few months. He and Linsey even got their ancient AC system replaced, just in time for this latest heat wave.
All in all, few complaints from the Moss family. RJ and I will continue our frequent visits to the UCSF transplant clinic so that no changes in his condition sneak past us.

Howdy Ho

This has been quite a remarkable week for several members of the family. Our Andrew has had a soreness in his lower leg that was bothering him a lot. After a doctor visit and an ultrasound he was sent directly to the ER at Sutter General in Sacramento. The diagnosis is a deep vein thrombosis, a blood clot in his leg. This is quite unusual as he does not sit for long periods of time, but there it is anyway. He is on blood thinners at home after spending one night in the hospital. He is supposed to rest but it is driving him crazy. They are allowing him to work next week. We were in Sac twice this week helping him and Linsey around the house. Just for additional fun their air conditioning went south last week during a Sac hot spell. The luck (or lack of) is incredible.

For me I did have an appointment with my new cardio. My dear wife had to mention I thrash around in my sleep (I disagree but what the heck, I am asleep). The doc immediately ordered a sleep study which could lead to having to wear one of those fighter pilot masks. I pouted and generally acted poorly for a while. They left it to me to decide so I am thinking hard.

So that about handles it for now. We will be attnding the Christian Family BBQ this coming weekend which should be fun.

Bob/Irv

Festival of Fire

I cannot let this pass without attempting to describe the event we attended last night. Along with the Frates' and Henrys we had a nice dinner in Lafayette then vanned over to a large parking lot in the Port of Oakland for the Crucible Fire Arts Festival. This consisted of ingenious and imaginative metal sculptures that each used intense flames as part of the presentation. There were noises and heat all around and it was fascinating. We finally dragged ourselves away long after our bedtimes but thoroughly blown totally away.



I was able to do cardiac rehab in the morning. dialysis in the afternoon and the Festival at night without any problems.

A Nice Quiet Week

After all the adventures lately it was neat to have a normal week. Dialysis of course and a trip Thursday to UCSF for a follow-up appointment. Everything looked OK at the exam but of course this can change at any moment. At least I am still listed 1B on the list even though I am not on a device nor residing in the hospital.

Thanks to everyone for the calls, emails and attention to this blog. It means the world to both of us.

Robert J.

Back to Reality

Grilling chicken on the barbie, watching last night's NASCAR race, driving our S2000 with the top down.....a few normal things that are so welcome after the last couple of weeks. I am grateful to all of my family and friends who helped me through this last adventure. Tomorrow it is back to dialysis and later in the week a couple of doctor appointments. Thankfully back to some form of reality.

Home at last!

Happy to report that I was able to leave the hospital this evening at 6:30 with my husband at my side. He was even allowed to walk out to the parking garage with me, which is a first. So we are now ready to resume our normal, hopefully boring lives back in Livermore starting right now!

Livermore bound?

According to RJ this afternoon, the plan is to let me bring him home on Friday 7/3 after his dialysis treatment. Could mean a very long day waiting for the actual paperwork to be complete, but he will be thrilled to be able to sleep at home for the first time in 11 nights.
(Kitty Lucy and I will be very happy to have him back also.) The amazing RJ bounces back yet again - Hooray!

Transplant Expo

We are fortunate to have had a chance to share Bob's story on a much larger scale recently, thanks to a serendipitous (?) opportunity stemming from our new extended family: daughter Leslie's new sister-in-law worked for a company that does publicity and promotions for a drug company that manufactures a major drug used to prevent rejection of transplanted organs. She knew the company was working in partnership with Donate Life America, to create a museum-quality exhibit celebrating transplantation and the heroics that make it possible, and so asked if we were willing to participate. Of course we were glad to help with publicity for this very important cause. A photographer came to our home in April for our "photo shoot", and the resulting pictures, complete with several quotes from Bob, were first displayed at the 2009 Transplant Expo for health care professionals in Boston the end of May 2009. The main goal of this exhibit is to raise awareness of transplantation and to inspire and motivate visitors to sign up to become organ donors. The first area of the exhibit will feature stories of life on the waiting list. The purpose of the exhibit was to introduce visitors to the need for action by helping them connect with people who are, or have been, through the uncertainty surrounding the transplant waiting list.

Cherie / Cheryl

Evening update:

After I left this evening Irving got moved out of ICU into a standard room, which is progress. He is unhappy about having a roommate now, but glad to be moving in the direction of less care and maybe home in a few days. He very much enjoyed a visit from 3 dear friends before the move, so all in all it has been a very positive day.