Just ordered a LVAD charm from a really nice lady on the LVAD Friends facebook page.  Wanted one that said Husband is LVAD strong....  and wow, she made it in like 3 hours....  after visiting with her, I learned that her husband just got his LVAD in March, and the day he had his surgery is the day they began NO VISITOR policy... he is young, 36 years old, so please keep them in your prayers, and here is her Etsy page.

Liz Wyser.    Www.coppermillstamping.etsy.com

Sometimes I wonder....  actually A lot of tines I wonder....

But here are my updates....  Larry was doing really good until last week, he started getting fuzzy brained and tired...  so with my OCD record keeping I realized that his potassium had been almost low, not dangerous, at his last blood draw, yet he was still taking potassium blockers with each meal, aw well as staying on a very strict low potassium diet.

So I began to get concerned.. and I had him stop taking that med as well as the sodium bicarb....  yep, I was right on...  had another blood draw on wednesday and his potassium was low, Kidney dr office called snd said stop those 2 meds and his torsemide (for 3 days) and take potassium for 3 days.
BUN is at 18
Creatinine is 2.31
Potassium 2.7

So, happy to report he again seems to be on the mend....

Thats all...  just staying home, staying safe as we can.

Wont know more about kidneys until next telemed conference, Dr Sanders wants to see what his kidneys will settle in at.....

Not really any news, Larry is continuing to make progress, he is getting some strength back, but slowly.  He does walk around the house fine, but uses his cane when outside...  he does go out everyday for fresh air and swing time...  and has done a little bit while out there...

next week is another blood test to see where those numbers are, but his home numbers are good... of course we are watching his diet very carefully, what he eats as well as drinks.....
Example no more sodas....   he loved his powdered lemonade mix....  no more... too high in phosphorus.   He is drinking water or old fashioned brewed ice tea...  no more of his loved vanilla i e cream....  in fact cow milk is gone....  lots of changes....

We are so pleased with our move to paradise....  we chose just the right time to relocate to this peaceful beautiful area of the earth....  in between health issues and before the shutdown....  cannot be at a better place to enjoy every moment with my million dollar man....  Lol, he hasnt gotten those figure yet, but it will be up there....  this last visit was 17 days....

Thursday, April 30th, 1pm

Ok.....  update after talking to Dr Charles Sanders who was at UAMS for a while....

they have not received yesterdays labs, but he wants to do labs again in 2 weeks, then again in 4 weeks.  He is not going to schedule the AV fistula right now..

he said usually the GFR is about 20 before they do them...  and he wants to see where his creatinine is going to level out....

They will do that surgery in TGH with the transplant team and vascular surgeon...  when done...

Larry liked him from the hospital,
I think he said his daughter or son went to Lyon...  played soccer...

So for now, it is just rest up and continue on....

Phosphorus is in everything....

Cheerios may be heart healthy, but they are not kidney healthy.

Hemodialysis fistula graft.

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....