Wasn't due back to the Dr until the end of the month, but shortness of breath issues had him call on Friday, and went in today. Yes, in emergency we woukd have quickly gone to ER with a call to LVAD coordinator on the way.....

Lab, chest xray, then echocardiogram.....  no swelling, lungs clear, so did a increase on diuretic, and ramped up his pump rpm's....  faster the pump, faster the push of blood to cells...  5600 to 5800....  he said walking in the house that he could already feel the difference....

Going to do a pulmonary function test on wed, then back to Dr a week from today...
later this month, he will be seeing an Endocrine Doc for his diabetes.....

I talked about seeing Dr Ransom everywhere....  saw him as we were waiting to get xray, on 3rd floor at Heart Transplant Center, he said, he might not get to see us because of a transplant..   So then up to 4th floor for clinic, he came through the wait room again, said he would get to see us.......   ..
 later, when we were in the room, and we did get to see him, we found out the transplant didnt happen....   we would have seen one of the other doctors....  both Dr Campbell and Dr Narisetty were in the hall at different times....

Then got a text from Tori with dates and times of other appointments and she will text up when his labs are done.....

Thank you all......  

Edit:

Well.... labs were not very good....  INR was scary blod clot low, so I ended up going to pharmacy to get blood thinner injections, 1 tonight, 2 tomorrow, 1wed, then go back to clinic on Wed for another INR check....

 click here for a good INR explanation

Changes in da blog......   since my original purpose for this blog has changed slightly, I am making some changes in its functionality and appearance.  Will be looking at ways to make it easier for other LVAD patients and their caregivers to stumble upon it.   And as Richard mentioned, even non LVADers might can benefit....  his wife Ann has other health issues, but care is similar....

So any suggestions are welcome...  like the red?  Red is heart color....
Not sure on if it will stay red, but expect changes... as I experiment.....
 first I need to learn how to properly create a blog....  research...

Slight setback.....   Larry is still feeling great as in no pain, however this past 10 days he has become slightly short of breath...   it is not like it was before, where he had to gasp for air, but enough that he is using his oxygen condenser machine again...  but we will go back in in Monday for labs, xrays, and see Dr Ransom.....  it could be med change, or it could be they need to up his rpm's on his pump to circulate more blood......

But this week, he has not felt much like getting out, other than the reunion....   so while he is better, he is by no means well.....   i have to remind myself...  He doesnt feel well,no walking, no rehab, makes for lonely errand trips for me...

And we are still on daily dressing changes. Being a diabetic means he is slow to heal.  His driveline incision is still having some drainage...  so Larry is a long long way from just taking off in the RV again....  I tend to be postive more than negative, so I write more about the plusses....  but there are still a lot of issues.... but every day now is better than the days he had prior, he just still has a long long way to go.

As to whether his LVAD is a bridge to transplant.   We have discussed this and it looks like probably not going to happen... his age, his insulin dependent diabetic  status, his kidney failure are all issues which any one can make him ineligible for a heart transplant. There is a long pricess to go through to be eligible Plus he wasnt sure he would go thru this surgery again.... then there is another set of hurdles and protocol after a transplant which are just as demanding as a LVAD  so for now his goal is to make the best of this LVAD.   The LVAD is still not an everyday procedure, here there is only one hospital in the state doing them, and they do about 50 a year, according to the last numbers I could find.

He will not be up to doing much travel this summer, so we have decided to stay fairly close to home for a bit.  So while we are hoping to do some RV travel, it will not be to Baltimore to visit his mother, or to Florida to visit my son, or to Oregon to visit our other family the RV Mutants for the eclipse.  And since he wont be traveling....  smile, I wont be, as I am his designated caregiver...

But I do need to get out and practice my driving skills in the RV, so that I will be ready for some closer to home trips....  FYI, over 100 miles is the criteria for FMCA TravelAssist....

For those still reading these blog posts here are future topics....   this will be my reminder to write.....
1. I still want to give you a glimpse of this amazing man I have married
2. I have been looking into research on caregivers, so I am going to try to explain my feelings as
           to why I feel I was given the opportunity to be his caregiver
3. I will try to explain our Mutants, and how these people have become so important to us.
4. Tips for helping other patients and caregivers... and ways that outsiders can be of help

And I am sure there will be more.   I will add them here as I think of them... so expect edits and I am open to suggestions on topics.

Btw, he is now ok for phone calls and visits.  If we dont answer, call back at a later time, we could have just been changing a dressing or napping....  I NO longer feel the phone HAS to be answered...

Dinner tonight, there were about 50 LVAD recipients at this dinner, maybe fewer, but I didnt count.  Of these I would guess 20% are women.

Larry with his new girl.....  our Tori, his LVAD coordinator.

And with Dr. John Ransom, his LVAD heart surgeon.....

Last night I was just browsing the web, and as usual, I ended up doing LVAD research.

Edit- i am finding there are other studies, but most are in medical journals without access to them....
Hoping that that will change...  there needs to be more support information available to both the recipient and their caregiver.




 Came across this study....   very interesting, I will be doing more seeking....

http://ajcc.aacnjournals.org/content/14/2/145.full.pdf

http://ajcc.aacnjournals.org/content/14/2/145.full.pdf

Kudos to the author

By Jessie Casida, RN, MS, CCRN, APN-C. From the Department of Adult Health, Seton Hall University College of Nursing, South Orange, NJ. 

Grandson will be 6 years old on Thursday, so we decided to make a road trip to visit today.   They live about 2 hours away, and was the farthest we have ventured out since Larrys surgery, but with son being a surgeon, and his best friend a vascular surgeon, our comfort zone was a little wider.

Btw... sometimes my photos get pisted twice, and it will not let me edit....   so...  it is what it is...

We had a great visit, lunch, and got to see the newest kittens....  they arent sure who the daddy is, but 4 of the 5 sure looked like rag doll kittens to me.  Vet had also said that....

I think the trip was good for Larry...  he even drove home.....
first time he has driven since January 30th.... yes he had some sore muscles...

June 1st will be a dinner reunion for the Baptist Health LVAD & heart transplant patients.  The men and women who work there are not only dedicated health professionals, they are loving, friendly caregivers....  just an amazing group.....

I asked if I could donate a painting to be given to one of the caregivers.  They have never done this before, but after discussion, they saud yes, thank you....   I dont know how they are going to do it, but here is the painting.  It is 18'' by 32'', a watercolor on paper.   I mounted it to a board and then waxed the surface to protect it.

Foley anchors do not stick well in Larrys skin.  They are used to hold the driveline from pulling. A stabilizer to try to keep it secure....   we were changing them almost every day, the alternate days I was taping them so they would stay longer....

Anyway, I came up with an anchor of our own, at least for now, this works, and has Dr. Ransom's blessing to use....  

Flowers were delivered....   from my sweet husband....   he isnt driving yet, so LOL, he said no card

This is our joke, we usually do no presents, just cards...   since I knew he wouldnt be getting me a card, I didnt buy one for him.....  instead I had one in my card stash that I had bought 4 years ago and never given.....  it was just a "time spent daily with you" kinda card.....   I gave it to US...  but he did give me a present, himself for a few more days, moths, and hopefully years,   plus from the hospital he bought me a new diamond anniversary ring......  LOVE is good..
Even though he doesnt do facebook, smile...

On Thursday, May 25th we celebrated our 15th wedding anniversary.  When we married, Larry had just gotten out of the same hospital after a 23 day stay.  He had gall stones and one got lodged in his pancreatic duct, causing severe pancreatitis.  When be went in, they told me he might not live through that.....  we had already made wedding plans, sent invitations etc, so yes we did get married, he doesnt remember much after all of those days on BIG pain killers...  and the year before he had survived a heart attack and 5 bypasses (before we met).....

So IF he ever reads this blog.....  Happy Anniversary my love.....  i treasure each day as if it was a year.

Ok...
WAYNE, informed me this morning by email, that he hasnt heard from me since the 18th....   yep...  things are going well......  for the most part.

You see, dear Wayne, I have had laryngitis, so could not talk, naturally being a blonde, I thought I could not write either... smile....

Ok, I have had a tiny cold, Larry has as well....   just enough to be bothersome...
Nothing serious....  but our schedule has been full, so I just got preoccupied..

Mondays, we go to clinic for his INR blood test, to get his Warfarin dosage.
Tuesdays, I go to get my Iron infusion, takes all morning.
Wednesday, I had a touch of tummy issue, think now it was another kidney stone moving.
Thursday, this week my mom and friend came over for brunch and visit.
Friday, i had to get blonded.
Today, we did the Walmart rehab therapy walk.

Oh, each day, we have breakfast, do whatever, have lunch, take nap, do dressing change, have a cuppa hot tea, prepare supper, eat.....  so it just seems that time fades from one hour into the next....

So, my friend Wayne.......  that is why I have been quiet...  Possum called one afternoon during dressing change, I missed it, but couldnt talk anyway...   BUT voice is coming back...
Give Earlene my hug.

I am taking really good care of Larry....   plus he smiles a lot more now that he feels better.