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...