Doctor appointment day is always a long day....  but today was a good one.   Every one there is just so great, to include the desk clerks, nurses, and "handsome John Ransom"....  found out on tuesday at my infusion that was his nickname.....  he laughed really loud when I mentioned it.

Why a long visit?   Well, all of it is at least in the same building.
1st is the stop by the lab for bloodwork
2nd is the stop by for a chest xray
3rd is to go to clinic for vital signs
4th is the room......  where our nurse coordinator does her thing. Larry has to unplug his data
      line, plug into theirs so they check past readings, she goes over everything with us, but I also
      text her during the week if needed.
Then We see Dr Ransom, he ALWAYS looks at his driveline, goes over meds, and numbers.
     I love the fact that he is so personally involved...   i mentioned to him that Larry had had a staph
     infection (Tori had checked it on Monday) and he immediately said where, show me...  i did a  
    good job of caring for that....
then there are sometimes other tests, like today they interrogated his ICD, to get that data, and they
     did another EKG, did one in step 3, but he wanted a longer strip.....  so the nurses gave him a
     4 foot strip...  laughing the whole time, should they wind it or fold pleat it....
Sometimes at the point we also see Dr. Hutchins, today we did not.

today he got very good reports....  stopped his med for the arythmia.....ecause he hasnt had any,  did increase a diuretic 2x a week, said all labs were great, and it is very obvious that his excercising is helping....  we also today met the 4th LVAD coordinator, Jimmy....   one of the 4 is always on call

Then we went to eat a late lunch...  becoming a custom...  so left the house at 10:30 got home at 2;30...
McAlister Deli today...   nothing fancy, just time out...

Larry has ordered a couple of new backpack type carriers and tried one out today, seemed to work good, and got a thumbs up from Dr.......

Larry is continuing to improve daily.....  both physically and mentally....   i posted on facebook about my visit this morning to UAMS.....  infusion center.

This is NOT a new condition for me, recurring....

 i had gastric bypass surgery years ago, as a result, by blood pressure is normal, cholesterol is normal, and I am no longer diabetic......  however one of the side effects that can happen after that surgery, is that I am now Iron Deficiency Anemic.....  my body cannot absorb iron through my digestive system, either from food or pills.  Seven years ago it had gotten so low that i could barely get from the bed to the couch....  this is not just iron in my circulatory system, but iron in my bone marrow,  so began the series of transfusions.....  they first though i would have to have these every 5 months or so, but after a few years we got it built up so that it lasted longer this time.  I do have this tested every 6 months at doctor checkups.

I could have waited a few months, but since I am Larrys primary caretaker, my doctor and I decided to go ahead before it got too low.....  no problems......  i drive myself, get hooked up to an IV, have the iron over a one hour infusion, then drive home...  will do this every Tuesday for a total of 7 weeks.... it is only scary before you know what it is......

He wanted to go with me, but I was more afraid of him picking up some illness.......

It is so amazing how much grandkids can lift your spirits.....   David, Katie, Anna, and Hayes came down today...  Anna's birthday will be Tuesday, so they came to celebrate.....  when we were at the grocery store Larry suggested that WE make cupcakes for her, he picked out a cakemix, and i got to make them, but I saved the decorating for Anna and Hayes....   went out to eat, Big Orange hamburgers, then home to eat cupcakes..........



NOTE  it is also amazing that this blog has a mind of its own.....  i posted all of the photos at the same time, but 2 are oversuzed, then i cannot scroll down to them to edit them......

Oh well.....  

Modeling the vest...     

no hanging wires to snag, but still heavy to carry....

Cut holes on the insides of pockets for the wires, they go around his back.....

Have some other ideas that I will try.....

Yesterday Larry wasnt feeling well and so skipped rehab. Was a stormy rainy day anyway....

 But later in the day, he said he felt like he needed to walk, and and he announced that he would begin going with me to stores...   sure am glad...   will save me money from going clothes shopping, oh, but then spent more on things/snacks for him......   lol  not really...   he is a major online shopper for things he wants....

 TODAY was a better day, he accompanied me to the grocery store....  it took longer, but that is ok....  he did great...   he just now asked me if I wanted to go out to eat tonight, at our favorite Chinese restaurant....  of course I said yes, now I am just wondering if he will take his wallet.... he hasnt carried it since new normal began.  Just expects me to have my purse.....   smile.   NOPE, HE HAD MONEY....   SMILE

He wore his new vest I had modified for him....  forgot to get a photo of him in it, but here are the mods....   he can run all of the wires/cords on the inside now. There is one inside pocket that holds the controller, and you can see where I have made and bound a cord hole.    Have a couple of other vests that I will be modifying as well.....

Only dear Possum would see that....   This man called the hospital while we were in Florida, and the desk clerk came to see if we would take his call....   cause he lives in Canada, and his name was Possum....   he always makes us laugh....   and we love Denise his wife too......

Last week Larry had his first day of evaluation at Cardiac Rehab, but no actual exercise.  Thursday, his first day, he didnt feel quite up to it, so he called in sick.....  oops.....

Ok today he was ready...  I went up with him, not for him, but for me...  i will now most likely just drop him off, and run an errand, or maybe take a nap in my jeep.....  it is still very surreal that we are where we are today, planning his treadmill time as opposed to hospice....  If you have not been reading from the beginning. We were getting ready to plan his hospice the end of February.... now it is SPRING

One of the adjustments for LVAD patients is no shower for now.....  Larry has a shower bag and eventually will get to shower, but not until more healing takes place....  baby wipes are great, I wash his hair in the kitchen sink for him, at least until he has healed enough to be able to raise his arms up.

But I found 2 great products.....  locally.....

Also here us Larry with his doggy, LitaBit, I cannot even take his vital signs without her supervision.

And speaking of vital signs...  we keep a daily log, he has no pulse any more...  his blood pressure reading has to be done with a cuff and a doppler wand.....  

Warning........
If you get queasy, you might want to skip this post.


Several have asked me what his driveline is like.....   it is healing, but we still have to change the dressing every day.... today I had a chance to get a photo.....   but had trouble with sterile gloves, sometimes they just dont want to go on......   second pair worked....

Anyway, just a couple of photos.  He has dome problem because a foley anchor doesnt stick to his skin, so I reinforce that with paper.... we were putting one on everyday, before i tried the tape.  it is just to prevent pulls on the dtiveline.  To the right you can see the controller...   the controller then attaches to either a split cord to for the two batteries or to a single device for hookup to an outlet....   when on the outlet, he can only go about 30 ft.   Using a special mediderm tape, breathable, paper tape was tearing his skin.....  yes, I label it, so I can remember if it was changed.  Nurses taught me to have a sharpie nearby.  At least 2 more weeks of daily changes, then  Dr Ransom might go to a every 3 day dressing...   if

He also has the incision for his heart, and drainage, but those are all healed up.....  so no dressings.

I stole this photo from lvad C facebook.   All 4 cardiac doctors......

Larry has been in recovery mode....   getting better each day, trying to adjust to our new normal life.  One of the adjustments is how to have his equipment on comfortably....   he has several carry modes that came from Thoratec, with the HeartMate,  but hasnt yet decided on what his main carry will be.  I have gotten him 3 different vests as well..... different situations and activities will decide what way he carries.  

But until his driveline has healed a but more, he is just trying things out to see which is the best way for him. The last few days he has had a lot of discomfort from the breastbones healing....  boneknitting back together, so that ductates how he can carry the stuff.  He said he had similar feelings from his bypass surgery 16 years ago.

It is EXTREMELY important to have his stuff anchored or secured...  one big yank or pull, and his driveline can be pulled out...  causing major problems. Stuff being his controller and batteries.

All of this, to say that tonight at supper, I had a scare. He got up from the table and walked to the sink....  all of a sudden, I saw his batteries going to the floor.  I yelled his name....  THANKFULLY, it was ok.... he had his driveline controller on a band around his waist, so it did not pull. He had just hung the batteries on the back if the chair, and totally forgot to pick them up.  But it made us both stop and think.....   it is essential that we never become too complacent with our new normal journey.
He had just yesterday started trying the waist band strap for his controller.

I realize even more, that all health complications come with their own set of problems and new normals....  i have become much more aware of the people I see and know, and try my best to respect what they are dealing with......   whether visible or not.....

Larry has coped better than I ever thought he would or could.  He has had some bad times, and says he hasnt fully come to terms with it all.  This man has my total respect with what he has dealt with.  I always think of this in terms of us, we, our.....   but it is him.....  with my support....
And we are both looking forward to our future.....