Last night John’s big floor model oxygen concentrator quit! He needs oxygen 24/7 and only the large floor unit can deliver when he sleeps. It was a tense time but I finally located the service person for Hillsborough County and the rep delivered a working unit about midnight. (He drove from Zephyr Hills.)

John feels much better today. The old unit may not have delivered oxygen at the correct levels for some time. We heard a loud boom and shortly afterward an alarm sounded. It would appear to work, but his oxygen level kept dropping. It was like the unit didn’t put out oxygen. The alarm would sound after about 10 minutes of usage and his level was lower and lower.

When awake, he could use his portable unit, but when he sleeps, the portable unit doesn’t work. (He has to breathe through his nose, and when sleeping, his mouth gapes open.) The floor model is “constant flow.”

When the new unit came his oxygen levels went up and they’ve stayed there.

I shudder when I think of what would have happened if it had quit while we were sleeping. I could have lost him!

We have a wonderful group of Kings Point friends.

I took all those who said (at one time or another) that they’d help us out. There are a bunch of generous folks and I’m counting on them.

So far, this is our list:
Sue & Bob Bemis 813-634-1010
Marilyn Enge 636-795-4823
Evie Cronin 508-930-4947
Sharon Nead & Dave 616-581-6843
Carolyn Cooper 248-890-9890
Stephen Cooper 248-890-1890
Richard Brooks 248-505-8322
Shelly Brooks 248-505-8237
Linda & Ron Ringenback 813-476-0334 (c), 813-634-1686 (h)
Dale & Kathy Johnson 813-746-4024
Kathy & Jan Haynes 813-224-1240, 813-928-3670
Crissy Jost 609-605-4556
Helen Ann Frobose 813-642-8386
Paul Hunt 813-634-8506
Cindy & Mike Baker 231-638-3274
Val Whipkey 616-902-7552
Jan & Doug Outhwaite 813-419-4590
Diana Franks 616-633-9290
Sherry & Bob Walker 813-938-4539, 810-241-0198

Each person/couple has confirmed to me/us that they’d be willing to come to our rescue, if necessary. What an awesome bunch.

If I was on the other end, I’d be proud to be known as someone who would help out in an emergency. These folks have said they’ll provide transportation, help us with emergency situations, and in general, be there for us. What an awesome group!!

I’m really counting on them.

John has been going through phases of being moody and jumpy. I can’t blame him and I’m sure I’d be worse but his attitude is very fragile. I am trying to deal with these changes. It’s not easy.

Last Friday, March 16th, John had a bronchoscope and flushing of his lungs. The resulting tests showed a large amount of blood in his lungs. The treatment included massive doses of steroids.

He was admitted to TGH and that’s where he stayed until yesterday, March 22nd. He was in intensive care part of the time. By yesterday, he was frantic to “get out.” I felt he got excellent care, but he wanted to go home. (Call lights weren’t answered and his requests were ignored.)

I drove our new (to us) car and didn’t mind at all. I used the SR-41 route which had less traffic and lower speeds. I made the trip back home Friday, a round trip on Sunday, and I came after him Wednesday and drove us back home (plus shopping afterward). I can’t say I like driving, but I am not as fearful as I was. We’re talking about going out to dinner Saturday and I’ll get behind the wheel.

I got him a walker with a seat which he is using to get around the condo.

He’s puffy, flushed, worn out and very weak. I hope he recovers some of his health.

I’m doing what I can to help him. I do the cooking, clean-up, and fetching. He needs to rest. There’s nothing more I can do but pray!

John will be having a bronchoscopy Friday.

His pulmonologist (Dr. Clum) can’t be sure what’s causing his lung condition to worsen so drastically so he’s going to use a bronchoscope and flush out his lungs (with salt water). The water will be examined for one of two possible conditions. From that, Dr. Clum hopes to know how to treat John. Let’s hope that he’ll be able to figure it out and John will improve.

If that doesn’t happen, I fear that John’s idiopathic pulmonary fibrosis may be worsening, which means that he will continue to decline. It’s a rough situation.

He’ll have the bronchoscope on Friday. It’ll take about a week for the results. We’ll be going to Tampa General for the procedure.

I’ve mentioned that I’ve been afraid to drive, (see https://sharons-blog.com/?p=12798) but I have convinced myself that I can handle this. We have a different, more reliable, vehicle. I have also found an alternate route using SR-41 which means we don’t have to drive on I-75. We tried it the other day and it’s three lanes both ways, low traffic, about the same distance and not many stops. I can do it!! Once I convinced myself, I’m no longer worried.

John’s condition has deteriorated so much that even he is concerned about getting back to Michigan in May. Thank heavens I bought an insurance policy which should cover us, if he can’t drive back. It’ll take our truck back, and we can fly. I’m glad I’ve planned ahead.

John’s health has deteriorated and he’s having a hard time keeping up with even our very limited calendar.

Yesterday was my birthday and we planned a lunch at Sweet Tomatoes (because they’d given each us free birthday meals which were good this week). We went and John seemed to do quite well but last night he even had a hard time showering. He was in bed early and today he can hardly take a step or two without becoming winded.

I’m afraid for us. He is obviously concerned and it’s getting him down.

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Today (Tuesday) we went to John’s cardiologist. He really laid it on the line and basically told John that he doesn’t have much time left. It was a shock. Yes, I know it’s a possibility, but I keep thinking in terms of years. I hope Dr. Khant is wrong. I do agree with one thing he said, that sometimes have a “procedure” for someone in John’s condition isn’t wise. We need to evaluate if it would it help or hurt?

John’s gastroenterologist (Dr. Hodul) has been suggesting an endoscope biopsy of his pancreas which for him has some risks. And if the spot on his pancreas were to turn out malignant, he couldn’t tolerate surgery nor chemo so why put him through a procedure that would mean shutting off his oxygen for a period of time? (They can’t do it when he’s being fed oxygen.)

Dr. Khant said it could make things worse, so why do it?

John was adamant. He didn’t want a party on his 80th birthday (March 1st). He wanted a cake and ice cream, but NO PARTY! He wanted to share it but was totally opposed to the idea of a party.

I ordered the cake (half chocolate/half white) he really likes from Nanette (the best baker in the area). I got one big enough for a crowd.

Richard (Brooks) was visiting a few days before the 1st and we invited him to “share” the cake on Thursday. We set a time for 4:00 but it wouldn’t be a party. Just cake and ice cream.

We let a few folks know by phone but most were invited by posting on Facebook, where we knew friends would read it.

Thursday, March 1st, came and so did friends. We had about 20 stop over. It was a pleasant gathering with lots of wine, beer, soft drinks, nuts (and other munchies), some fruit, and some trail mix. John’s 80th was acknowledged. We sang “Happy Birthday,” he got lots of hugs, and he was happy.