Tuesday April 28th, 7pm

On Sunday I was disappointed when Larry texted me that his INR (blot clotting factor) was only 1.7...  The doctors had told him they wanted it to be at 2.0 before they would release him...  His kidneys were rebounding so that was not an urgent problem anymore, but they did want him to be safe... The lovenox shots he might normally use when his INR got low can not be used with kidney problems....  Remember he has a LVAD heart pump....

Anyway I decided to go down and do some work in under house area..  and did about an hour worth, when I moved a concrete block and there was a baby black snake... I didnt scream, have gotten used to the one we do have, but needed a rest break....  so while I was snake breaking, Larry called and said he was going to get to come home after all....

Just what I needed.... so quick shower then headed to Tampa...  I was so happy to see him, to touch him, to just be....

He was very weak and very tired, but got him into the house, fed him lunch and we both napped..  dinner, fresh baked turkey breast and homemade egg noodles, lime sherbet,then bedtime... He slept... he slept well....

rested all day yesterday, Had mashed carrots and chicken and he slept last night...

Both yesterday and today we sat out on the deck, and then this afternoon he went down and we sat in the swinging chairs for an hour... tonights supper was meatloaf with homemade bread and green beans...  then almond milk peach yogurt....

Today his INR was 2.2... hooray...

Tomorrow is get out for blood work, then Thursday a telemedicine chat with his kidney doctor, at which time they will hopefully schedule his fistula graft for future hemodialysis...

More on that when we know... but it takes several months before that graft can be used, so they are hopeful his kidneys will behave until this access has healed...  His kidney problem is not new, it is a result of pancreatitis 18 years ago...  and we have been aware of this for 6 years or so...  hemodialysis is a given, just not sure when it will have to begin, but I will be training to do it at home... yes I will be sticking him, but the graft will make that easier than having to find a vein...

So I will be adding links now to possibly help a future LVADer that might be facing this in the future.

The foods are becaue someone might be helped.... his diet concerns are :
No phosphorus
Low potassium
Limited Vitamin K
Heart smart
Insulin dependent diabetic...

Yep, really...  now I know why I took nutrition in college....

Thursday, April 23, 4pm

Havent posted much...  lately
just mentally and physically preparing for next step.....
His kidneys are rebounding, so dialysis is a few months off (hopefully)

But he will be having to adhere to a strict renal diet to keep his kidneys happy, so today
I have been clearing the house of foods he cant eat, so as not to tempt him.... he has way more will power than I do, so that is good...

Went to the grocery store today to get some of the foods he can have, That is after many hours of researching renal diets, heart diets, Warfarin diet, and still diabetic...
Phew, that leaves water.... but there are some positives.... my homemade pasta is a yes....
he can have almond milk, rice milk, but NO cow milk, NO sodas, No potatoes, no tomatoes...  NO CHEERIOS, they are high in phosphates...
If a food says ...PHOS....  then it is not good...  was reading the back od every label I picked up....

Anyway, his creatinine is dropping, they have restarted his warfarin (blood thinner) just need it to get to his range....

He will be returning to the hospital in May for the dialysis fistula graft...  he has to do inpatient since he is on warfarin, otherwise it would be outpatient
the temporary port can only stay in 2 months so they do not want to put it in until he has to have it,
And there is greater chance of infection....   the fistula will have to heal several months before it is useable..

Thanks friends for reading and caring...

Tuesday 10 am April 21, 2020

Ok.  I just talked to Larry and his Dr and APRN,
his creatinine is dropping slowly... going to let him come home after he gets back on warfarin....
dont have this mornings numbers....
they do want him to get a fistula after the elective surgery ban lifts....
Dr Raj knows our pcp....  Dr Thomas
Larry can go to Quest after release on for labs...  telemedicine visit after that
Dr Raj wants him on a strict low potassium diet

Putting sink in today, so yes it is safe for him to come home....  lol

INR 1.4 yesterday, dont know todays....

BREATHE is what I tell myself...

Tuesday 7pm, April 21

Back on warfarin....  amazingly there has been no heart problems....  one day at a time...

He almost had an emotional meltdown this afternoon...  kidney doctor had been in, WE talked, then a couple of hours later, another doctor from surgery came in saying he HAD to get the fistula surgery this week..... He lost it with her, because he had just been told by kidney doctor that they would wait.

Anyway, his lvad coordinator walked in at the end, she got upset thinking he was refusing treatment, called me...  so I called him, got him calmed down, called her back...  then his cardiologist’s partner came over and got it all straightened out,    Part of that whole problem is his glucose has been over 200, they weren’t hiving him his at home insulin dosage...  any time it is over 160, he gets horrible headache...  well Maria got that fixed, the gave him more insulin, and this morning it was down to 163,  headache gone....

So Larry knows he will need to have the fistula, within 3 months...  scans and ultrasounds are done....... In prep for that...
he was even ok IF they had done the port....

  but right now, they have restarted his warfarin tonight...  thinking to let him come home for a bit, with lab work done up here, and telemedicine visits and a strict renal diet....  kidney doctor said his kidneys are in recovery...

Minor problems here, tomorrow I get to install my new sink faucet, because the one Larry bought it just too big, and it is defective....  he bought it a year ago.... Tonight I just installed the disposal button,   wow.. I am learning so many new skills...  in my old age...

So that was today....    love you all...

Tomorrow plans are to rest up and clean house, and bathe pups...  had to cancel their grooming appointment, because LitaBit didnt make it to the vet for her rabies.....   it’s on my list...

Monday 7pm....
Inforgot to update because my countertops did get installed today...

At 10:30 am Larry facetimed me to tell me that had cancelled the port... they think his kidneys are recovering... his numbers were getting better...
Tomorrow they are still going to do a scan oh his arms in case of future fistula, but for now if his numbers keep improving, well......  just pray

He spent most of the day in his chair and other than headache from glucose he is doing well.... they will never give him his at home insulin dosages...

stay tuned....






Monday April 20, 8aM

Prayers please....

This morning the  kidney team will be putting the hemodialysis port back in his neck....
the other was done in an emergency, this one will about 6 inches away from the vein, for less infection risk

I did talk to the doctor yesterday and he said that when Larry came in 10 days ago, his kidney numbers were so high that they were off the chart, and he was amazed that he is now up and feeling as good as he is...

they will also be scanning Larrys arm to see if the fistula graft is going to be possible....
It is so scary that I cannot be there, but he is calm.....
He understands that this is the only way he can live,

we both hope that after a but of time, we MIGHT be able to do the HOME hemodialysis.....  rather than go the a dialysis center 3 days a week...

Bryan, Christie, and kids came out yesterday for a social distance visit, ho hugs, but lots of smiles...
They fished, swang, played on the beach, Madi and I played checkers, then we got carryout, fried shrimp and lobster rolls....
I enjoyed when we all facetimed Larry....
oh had weed pulling contest to see who could get the one with the longest roots, they thought it was fun....  then we used by phone app magnifier to examine those roots

Long day emotionally....  the procedure is planned for 11am, please think of him....

Steps for permanent dialysis...

Information update

On Monday the doctors will put in a dialysis catheter in Larrys neck....  this will allow him to come home when they can find a dialysis center that can deal with his LVAD as well.....

This will be a temporary port, they plan on doing a fistula Y graft in his arm for eventual use, but it takes a couple of months for that to heal...  dont know when that is planned for......  hoping to find out on Monday....  

He is back on iv heparin drip because he cant take his coumadin prior to this surgery/procedure....  such a fine line between clotting and not with his pump....

Cardiologist says his heart/LVAD are doing fine....  and Larry likes the kidney team doctors....  he really is doing well considering...  at least he can see the water, and now that he has his Ipad he can keep up....  

 Catheter 

A FISTULA

A surgeon connects an artery to a vein, usually in your arm, to create an AV fistula. An artery is a blood vessel that carries blood away from your heart. ... The AV fistula is a blood vessel made wider and stronger by a surgeon to handle the needles that allow blood to flow out to and return from a dialysis machine.

Ok...  today he had all Iv’s removed, but his numbers are not doing what we had hoped....

Larry had severe pancreatitis right before we got married, the years of being insulin dependent diabetic took a toll on his kidneys....  about 5 years ago ge was told he had stage 3 kidney disease....

so it us beginning to look like his kidneys just are tired...

the doctor told him today that he can walk out and most likely die in A couple of weeks or he could begin dialysis....  in the past when we discussed this, Larry was worried that it would hurt, but after going through this he now understands just what it is, but he is ok with doing it...

so not sure when he will get to come home, but he has his ipad now, his glasses and his teeth.... so we just monitor and adjust...

No matter what I have been blessed to have Larry for as long as I have...  I treasure the life we have....  and the time we will have....

Ok. Todays update...

Larry is in a room on the 9th floor with a waterview....
his dialysis port is out....  he seems to be feeling good....

Tomorrow I am taking a care package to TGH for him...
Some basic essentials, like his glasses and his teeth....
And phone charger...

Some grooming stuff too.... he went a week ago via ambulance transport, so none of those items were on my thoughts to gather...
I gathered his LVAD essential...

The Nephrologist doctor is now watching over him.... heart seems good, but kidneys are the concern, but today I heard the doctor say, via phone, that right now he wants to monitor his numbers, my guess is 4 or 5 days....  there is always a possibility of future dialysis but that is not a given....

Thanks everyone for your concern....  many of you needs prayers as well...  you have mine....

Update on Larry
Tuesday at noon, April 14

Ok. Just talked to nurse.....  Allison, she was with him yesterday as well....

He did have `1 unit of blood yesterday numbers were slowly dropping, hemoglobin now at 9

Stopped dialysis st noon yesterday, then did last night for 10 hours
He is peeing on his own, and eating about 80% of his food and getting protein shakes

Might decide to do hemodialysis hold till tomorrow... watching his numbers
Then will go to dialysis as needed... rather than scheduled.

Map in high 80’s so increased his coreg

The dialysis line he is on is not compatible to the floor type, so before they transfer him they will do a line exchange....  maybe tomorrow on that.....

So will be in ICU until at least Thursday....  which in my mind means he gets better monitoring....

PT coming today to get him up and moving, but he was in his chair for about 4 hours yesterday....

All postives....

It is such a relief to be able to facetime him...  actually I am letting him connect with me, since I dont know how he is feeling or who is there...  he just finished PT

Thank you friends for following and caring....

Sunday 7pm update

Good info phone call with nurse Dillon.... about an hour ago, then Larry just called... as I was typing this update..

Ok. No fever, no pain,
vital signs are all stable...
Heart rate jumped this afternoon to 150, but started carbetasol (sp). And it is normal now
Decided to not stop dialysis yet because he does have a kidney infection,

Creatinine 1.6
Bun 27
Potass 4.4
Mag.    2.2
Phos.   2.5

Will be in ICU at least 3 more days....
i told Dillon I have a concern with the floor, since I cannot be up there....  last time he was in a room at the end of the hall, and the nurses told me, they could not hear his lvad alarms in that room.....

But he is ok with being there for now, and is in much improved spirits, ready to get feeling better....