doctor visit april 28 2016

My visit with the doc went well. He was surprised to see me smiling and not mad at him –he just knew I’d be sick, sick and mad. I laughed and told him that I was so much better than when I was in hospital there was no way I’d be mad at him.
We’re still waiting on some results from Jewish on my Iso???what, Rita. My brain says iso-topes that is not what they say and I can’t for the life of me remember, but it has to do with the testing of my particular bacteria I guess.
Anyway-he says hopefully we will hear soon and know what direction to go.
He told me about a spot on my lung that is due to the COPD–they call it a hole and his fear is that the bacteria will settle in there and there won’t be a thing we can do which is why he wants to knock this on back as far as possible to give me some good years. He says then if it comes back-and it will-we will do it again if need be.
Otherwise, come back in a couple months.

church stuff

Hubby got the church mowing bid this year-he didn’t last year as the grandson of a friend of ours bid on it- a very low bid to ‘save’ the church some money.
One man is the head of grounds. He will be called HoG-he is the one to tell hubby when the yard needs mowing. Certain ones don’t want it mowed when it looks bad because that might mean mowing every week at 130.00 a mowing for a yard that’s at least an acre, maybe more. It takes 4 hours to mow with a 54", 26 HP Zero turn mower.
Since March, where we had an early warm up and wild flowers began to bloom the HoG has told hubby to wait-CoD (Chairman of Deacons) says lets wait another week. When he finally mowed it right before Easter it was so bad in places that it choked the mower down.
2 weeks later hubby asked HoG about the yard and HoG said that CoD said no, it didn’t need mowing. Hubby went to CoD and told him he’d have to rebid the yard because he wasn’t going to tear his mower up mowing that huge thick yard every 3 to 4 weeks.
So-Friday HoG’s wife text me to write a check to a lawnmowing service that is local. So I knew who mowed it this time-over 3 weeks after the 1st mowing.
Secretary came over to bring me the bills yesterday and we were talking and she mentioned that HoG had told preacher’s wife that she could mow the yard every OTHER week if she wanted to.
That upset me because I truly thought the HoG and his wife were good friends of ours. To me good friends would stand up for each other. I thought if it’s OK for the preacher’s wife to mow on a twice a month basis, why couldn’t hubby. Why did he have to be yanked around like a yo-yo? True the preacher’s wife quit her job when they took our church field, but the preacher kept his banking job as a loan officer so we know he makes reasonably good money.
I honestly didn’t want hubby taking the bid but he likes to have the extra pocket money. It’s such a hassle to mow it around the rains when it has to mowed after Wednesday and before Sunday and mow when others think it’s time and listen to even more complain about how scraggly it looks.
Anyway-I told CoD’s wife what hubby had been told and she said her husband had nothing to do with the mowing and never told the HoG when to have it mowed or when not to have it mowed. I think hubby and CoD will talk today. It might cause a huge ripple in the church. HoG might deny ever saying that, but right is right.
Lord, I sometimes think if I can just hold on until I can get medicare and I don’t need this part time to qualify for working disability, then they can have my job of treasurer and I won’t feel obligated to smile when I feel I’ve (or we’ve) been stabbed in the back.
I told hubby that with all this health stuff going on, I did not need a bunch of turmoil anywhere else in my life-
Ok, don’t whining. 🙂 And that my dear Rita, IS whining.

yet again another change

H’burg doc’s office called yesterday. Said my trough was low re: the Amikacin. Said between McCollum and Webb (Jackson doc) they were stopping even the Amikacin until the (I thought she said Isotopes) comes back and that could take a week or two. They may even pull the pic until they determine what they will do with me. They don’t want to give me JUST Amikacin because this bug requires 2 IV antibiotics and taking Amikacin alone could cause the bug to become resistant. If I become too sick before we get that test back, then I’m to call H’burg and go back into the hospital and they will try my Amikacin with something that began with a B-don’t know why they can’t do that now but I was so discouraged I didn’t ask.

I keep thinking if I’m not being treated how will ever have enough breath to do the FM when it opens in May. Right now I feel fine, as long as I am sitting on that couch and not moving a lot. I do my 3 breathing treatments soon after coffee and can move around slowly without extreme huffing and puffing. By noon-if I’ve not moved around a lot, it’s another neb treatment to even be able to go to the sink and I have a small house. Then around 5-6, it’s the evening treatment consisting of 2 meds and I’m good for a bath without thinking I will pass out.

I honestly don’t know about oxygen. I had it in the hospital and while I slept better, I didn’t have any more walking air.

morning update

Just a quick update-yesterday when Dr. Webb ordered all meds stopped until blood work was done, I had already taken my daily dose of Amikacin. I didn’t take the 3 doses of Cefoxitin that would have brought me to now–4:30, 10"30, 4:30.
There is such a world of difference in just my breathing, not to mention my overall feeling of well being. While Cefoxitin didn’t make me extremely ill like the Impemem did, I always felt yucky afterwards and my breathing was more labored, I became more short of breath on just a short walk.
This morning I have fixed my grits, washed dishes and put on a load of clothes all with no extreme labored breathing.

Changes

Oh mercy. HH nurse came was doing her thing trying to draw blood for a amakacin peak and some other test when Jackson docs nurse called. Got off phone and Hattiesburg nurse called. Got off phone and drug people called. 😀 I don’t like being so important.
Anyway stop all meds till blood results are back, whatever test Jackson wants. Also they are sending my stuff (labs and such) to the Jewish Hospital in Denver, Colorado or I think that is where they said it was. Anyway that’s the latest.

New med issue

Friday I was started on the 2 bags of Ipemimin and the other one…every 6 hours. Within 15 minutes of finishing the meds I became extremely nauseated. After the 3 AM dosage, it was worse and with each dose thereafter the nausea, just can’t hold your head up, icy hot feeling from chest to top of head worsened. I contacted Home Health, they spoke to the on call doc who said under no circumstances should I stop the med, instead prescribed Zophran for nauses. I got this and began to take it, with no improvement what so ever. Each dosage caused me to become more and more unable to go. After the 3 PM dosage of all 3 yesterday I began to heave and try to throw up, even on nausea meds. I had tried to eat, but even with the nausea meds, I simply couldn’t take in more than a few bites, and I was sipping water and juices often.
Up until adding these 2 new meds, I was breathing better, feeling stronger every day and looking forward to joining life again.
At the 8:30-9:30 dosing we spaced out the C-antibiotic (forgot spelling) and I only used 1 bag of the Impenimim-I didn’t throw up, but was still very nauseous. I also noticed difficulty urinating.
I completely skipped the 3 AM dosing, and apologize for not obeying orders, but it was do something or I do believe I would have gotten worse and worse until I ended back in the hospital and I don’t want to be there if possible. I woke feeling much better, peeing much better and thinking I might be able to eat a decent breakfast.
I have spoken with Infusion Solutions and they advice adding the Cifoxitin back and see how that goes, so I am doing that.

—
It is not because things are difficult that we do not dare; it is because we do not dare that they are difficult.

New meds

First, I got my new breathing meds -same thing I was using but for the nebulizer. I used them and there is/was such a difference in my ability to breathe I was so encouraged. I felt as though with these treatments I could slowly begin to do more around the house because I would have the breath to do so. Not only that but I would feel up to going to church.

And then:

Late yesterday, around 4 I called Infusion Solutions (where my med comes from) to be sure they were sending me a new supply since I had used my last bottle. I was assured they were working on it.
Around 6:30 the courier called to confirm they were on the way and would arrive around 8. At 7:50 one of the Home Health nurses called—not mine, she is being promoted to the office, but I know this girl’s family well. She wanted to know if the meds had arrived and finding out they hadn’t, she said to call her as soon as they arrived as she was sitting on go to come. I asked her why she was coming over that I had already taken my med for the day at which time she informed me that the doctors had added 2 new IV meds.
Whew! Ok!
Thank God Ana was home. Terry was at the ‘shed’ and well deserved the night with his friends as he had been by my side all week except for work. Although Ana was napping, I quickly went and woke her so she could accept the med if it arrived before I was done with my bath, and I was determined to bathe just in case either of these meds sent me back to the hospital. 😀
So-meds arrive, Nurse Heather arrives, and these 2 meds are every 6 hours-fine-EXCEPT one of them isn’t an easy flow bottle (or whatever they call the self-contained ones) it is a hang and drip and instead of 30 minutes it is an hour long. Now HOW am I going to manage the Farmer’s Market with this thing hanging for an hour? I could manage the easy flow one as that just sticks in your pocket, I can even do them myself now that Heather has given me an extension to one of my outlets.
Well, fear set in over possible reactions so I hit my prayer chain folks and they started praying and Heather started hooking me up. The 30 minute one did fine, the hour long one cause some shortness of breath and a (don’t feel good) feeling, but initially that was all. Heather left and as I got up to head to bed the nausea hit and I really thought I would end up puking but I managed to get into bed and finally that subsided.
Ana woke me at 3 AM (love that youngun) and we begin the routine again-this time the hour long med (haven’t learned their names yet) started me feeling nauseous by about the 40 minute mark and it got worse. It eventually got so bad that I had the saliava (how is salava spelled?) backing up in my throat but thankfully no throwing up. We have to seriously talk about this one.
Anyway, even when I woke up I still feel sickish.

Hospital and doc visits

— March 28 Monday, after speaking with the doctor’s office twice the week before, I sent them word that I was now ready to do whatever to get to feeling better. It was obvious I would not make it until my Jackson appointment the 7th of April. I was instructed to come to the hospital for direct admit, which we did, Terry coming home from work to carry me over there.

An hour + drive to the hospital and a 2 hour wait and finally I was being wheeled to a room. Another hour went by, or so it seemed before even a tech came in to do anything with me. My doctor almost beat the nurses in..they had just come in to attempt an IV when he peeked his little face around the door. The nurses failed with the IV, I had to have drip started so they could begin IV antibiotic, so Doc calls one of his NP and he comes and attempts to insert a Pic Line. Had I not been such a difficult patient he might would have succeeded, but 3 attempts to run that wire into the vein and 3 fails, he gave up. Instead he inserted it in one of my neck veins for the night; assuring me that Radiology would be able to succeed the next morning because they could watch the path of the wire on their monitor-something the NP didn’t have.

March 29, Tuesday Before breakfast Radiology came for me to insert the Pic line. Wow, they didn’t even get me up out of bed, but rolled me bed and all down stairs. Nice doc/radiologist did the procedure, talking the whole time. He knew some folks from Tylertown, he shared some childhood memories. Over all a nice fellow. At one point he said, “Now why did it do that” and I thought, “Oh no”, but then he says—“Got it” and I knew we were home free!!!!

Finally. I saw infectious disease doc that is here in Hattiesburg, a Dr. Lin/Lynn?? He changed meds, and told Terry and I some disturbing news. This is not curable. We can only hope to control it. Acceptance is part of our program. I cant change it. Can’t fix it. So acceptance is best route. Not to say I don’t whine sometimes. But I’ve earned that don’t ya think? The site is tender and hurts some but I’m so tiny it’s to be expected. I’ve dropped down to about 93 from 98 since I’ve been sick. Trying to up protein per doc orders. I have moments I get scared and worry bout Ana and want to cry but then I remind myself it’s all in Gods hands and He will take care of us.

March 30, 31==Wednesday and Thursday went by without a hitch. Breathing treatments 4X daily, one of them at midnight; 1 med bag for 30”, another med bad for an hour, and in between they unhooked me making it nice to bath, potty, walk a little walk down the hall. The Sunday school class sent me an Easter basket filled with candy and chips; Rita sent me a beautiful basket of flowers and Pat came to visit on Tuesday and brought me a Grace sign..since we both needed God’s healing grace as she was going in on Wednesday for a knee replacement.

April 1, Friday, Finally Doc’s associate (Doc was off all week) came in around 4 and released me. I would go home with the pic line and 1 antibiotic, Amikacin to take once every 24 hours. Home health would come teach the family how to administer it.

April 2, Saturday, Brenda came down, Stacie came down, Ana did laundry and such, Terry mowed. Sandy brought some delicious broccoli soup and a love offering, John and Dana stopped by with sandwichs, Later on Kristy, the home health nurse came—back when she first began with HH, she was grandma’s nurse. She taught them how to hook the med-it’s easy, has it’s own pump in the plastic vial it comes in, she draws blood a couple times a week, and life should begin a normal flow once again and I should start feeling better soon. I do have to take oral antibiotic also, Augmentin, which is rough on the tummy, but with Prevacid and such and Probiotics, I will try it.

Monday, April 4 Email Doc’s nurse asking questions about some medications I normally take, interaction with my Amikacin and should I continue to take the Tobramycin (inhaled antibiotic). I was advised it should be ok to add the Tobramycin to the regime, so that evening I took my Augmentin about 30 minutes before or after (don’t recall) the Amikacin, which was taken around 5. No problems. Around 7 I decided I would do the Tobramycin treatment, take my shower and be ready for the program I like to watch on Monday night….so I did. I had the normal breathlessness after bathing, so sat on the toilet seat and rested a few before drying off, brushing teeth and dressing. I then came to the couch and sat down. The breathing lightened up a bit but not much and as I sat here it seemed to get worse-like I simply couldn’t catch my breath. Around 8 I got up and took an Albuterol treatment hoping that would open things up-but if anything things got worse.

Ana came in around 9 and she told me to contact the nurse, so I did who advised me to go to the local ER. I called Terry, who was helping Bruce and Charles with cows and pigs, he finally got here and off we went, arriving at ER about 9:30. They did NOT get in any rush for sure. Kristy met us there and was my spokesperson since she knew so much about my condition. She was very irritated at they nonchalant manner in which they lounged around on their cell phones while I struggled to breathe and there was NO one in the waiting room. Finally I get in back, hooked up on O2 and eventually Dr. Bullock comes in. He listens, he listens some more. He orders a breathing treatment. He says there is no air moving in one side and virtually none in the other side. After a while he comes back and wants to send me to H’burg. Said he would feel much better if my Doc checked me out to be sure it wasn’t what I thought it was and told them it was—a reaction between Amikacin and Tobramycin.

Ok, so can Terry take me. No, got to have the O2. Have to go in the ambulance.

1 ½ hours later the ambulance arrives and thus begins one of the most miserable rides in the world. Hard bed/table, no pillow, screaming headache, squeaky bumpy ride. Ugh. Oh well, it is what it is. Arrived in H’burg around 1, took about 30 minutes to get into a cubicle. Thank goodness I brought a cup of ice with me from T-town or I’d have literally dried up. They wouldn’t/couldn’t give me anything, not even a drink of water until a doc saw me and it was about 6 before he came in. A Dr. Patterson was his name. Likeable fellow, ordered a breathing treatment and finally something for my headache which took another half hour to arrive. Glad I wasn’t dying.

Needless to say, even Dr. Patterson didn’t know what to do with, so he says he will call one of the Pulmunary docs and in about an hour in comes my Doc. We talked, I told him what happened. He didn’t say it was, who knew for sure without running another trial and I wasn’t up for that, but he did say just in case, then let’s not do Tobramcin again. No problem for sure..He talked me into staying over night promising to let me come on Wednesday morning, which he did. When the 12 hour span for Tobramycin rolled around, my breathing returned to normal and the headache literally disappeared and even Tylenol doesn’t do that. I KNOW it was the Tobramycin.

Ya see, I’m allergic to a lot of ‘mycin type antibiotics and we were simply trying this one until I could see the doc in Jackson. When I saw her she said Tobramycin and Amikacin were in the same family, so my little non-medical brain says it was too much of a good ‘mycinthing and it backfired. 😀

April 7, Thursday We got up at 5:30 and left here at 5:45 heading to Jackson. We finally found the place, and while Terry parked I went in to find the Suite I needed. Oh, I wish I had gotten a wheel chair, but I made it. Saw the doc shortly after signing in…had lost another few pounds. She asked lots of questions, listened to my chest, looked in all my upper crevices and said she wanted to add another antibiotic because this is usually best treated with 2 meds given IV and an oral one.. As we left she asked me who convinced me to put all these holes in my ears and I just laughed and said, “Oh, I’ve always had a little bit of wild side.”

We went through Brookhaven so we could get some lunch, then stopped by WalMart where I learned to drive the electric cart; being too weak to walk I had to do something. It was too warm to just sit in the car. Then home.

It is not because things are difficult that we do not dare; it is because we do not dare that they are difficult.