Update 12/13/18 Good news and bad news,...

[J.R.E.]

Hi All, thought I would give an update,...

Good news, and some not so good news,...

First the good news.  I started on Triumeq on April 23rd , 2018.  I was tested on May 25th 2018.  After approx. one month on Triumeq, my Tcell went to 404 and the CD 4 percentage was at 13%.


I just had labs done on November 26th, 2018,.. And I am happy to say that my CD4 is now at 600, and my CD 4 percentage is at 55% !

This is the highest that these numbers have been, since starting meds in October of 2003. HIV viral load not detected.

Other lab results are:

Cholesterol--- 190

HDL--47

LDL --122

TC/HDL Ratio-- 4.0

Both my primary and I.D. doctors will be monitoring my eGFR, and Creatinine, those numbers were slightly off and I will be retested in 6 months for those.

eGFR was 49 ( Should be above 60)

Creatinine was 1.45,   should be between .64 and 1.27

ALL other lab results were good.


Now the bad news,... My Primary care and my I.D.  Doctors feel,  That I am now at the point, to seriously consider getting my Mitral Valve replaced or repaired. And the thing is,... I AGREE !!


There has been quite a change in my health over the past 6 months.  Even though my HIV health has improved dramatically,  I am now experiencing much more fatigue and weakness, shortness of breath. Anything physically related, Seems like a struggle. This is associated with the bad Mitral valve.

I find myself laying in bed for outrageous amount of hours.  Exercise has been minimal, because I wear out much to quickly, and I get shortness of breath.

I also am having some issues with my feet swelling up.  It doesn't happen often, and it's not painful, but the swelling is obvious when it happens.  Usually if I lay down, The minor swelling, on the tops of my feet, will go back to normal in about 15 minutes or so.

My Primary care refers to this condition as Peripheral vascular insufficiency. Most likely caused by the Mitral valve getting worse. He has prescribed those compression socks.  Now I really look like an old man !

I had another Echo cardiogram done, this past Monday.  The person doing the test asked me when I was seeing the cardiologist. She seemed concerned.

I responded I have an appt., on Monday December 17th.  So there will be more discussion to repairing this valve next Monday.



So that's what's going on,.. Except for the fatigue, I am doing well, and not in any  pain or discomfort.

I will update this as I find out more about getting the valve repaired.

Take care all, hope everyone has a great holiday, and a Healthy NEW YEAR !!

Ray

[J.R.E.]

   OH yes,...  I had a birthday on December 3rd.  I am now 67 !! 

[J.R.E.]

UPDATE 12/18/18

So I had my appointment with the Cardiologist on Monday, and here's the lowdown.

The doctor and I decided on tests that were done, and how I've been feeling, that the time for surgery has arrived. My last echo cardiogram, showed the valve was much worse, than the previous echo.

On a scale of one to ten, he rated it at an 8, which simply means time for a new valve. It also surprises me how much valve deterioration has taken place, over the past 8 months.

The doctor is giving me a little time to absorb, all that we talked about on Monday.  Ed and I were in his office, for almost an hour, asking plenti of questions.

This will be the sequence of events :

The cardiologist, will set me up first with a dentist at the VA, to make sure there are no current infections going on in my mouth/ GUMS). He claims this is normal procedure.  Its important that prior to my operation, there are no current infections taking place. I don't have any problem there.

On Feb 5th, 2019,  I will meet with him again, and he will schedule another TEE , along with Cardiac catheterization. For those unfamiliar, a TEE procedure, will send a camera down my throat, to get a better look toward the heart

https://my.clevelandclinic.org/health/articles/transesophageal-echocardiogram-tee

Cardiac catheterization :

https://www.mayoclinic.org/tests-procedures/cardiac-catheterization/about/pac-20384695


The Heart catheterization, will be done ( I believe he said) at the same time, once the appointments are set up. to

I thought I was going to have a less non invasive valve repair done, ( Or maybe I didn't fully understand) However this will be open heart surgery. I will be opened up through the center of the chest. 

He made sure that I was aware, of the seriousness of this operation.

Depending on results from the Heart Catheriztion,  A bypass, and mitral heart valve replacement,  will be done together.

He was hopeful that this surgery could be done at the Haley VA medical center in Tampa, which is probably 25 miles from where we live.

But, he did not rule out the possibility,  That I may have to have this done at the VA, in Gainesville, Florida, which is about a 2 1/2 drive north from where we live.

He stated, that I can expect to stay in the hospital 7 to 10 days.  After I get back home, I will have rehab 4 times a week, for at least two months, at the VA medical center in St. Petersburg.

I also have the cardiologist telephone number.  I can call him anytime prior to February 5th, and give the go ahead, for the tests/procedures that are required or additional labs that may need to be taken.

So,... this is definitely a moving forward, I will have more info, after the 5th of February,  and will know more, about the TEE and heart catheriztion, and about the place and time of surgery itself.

I do realize that this is a very serious operation, but I am looking forward to to having energy again !! I am hoping to being completely healed up by May, so I can get back to swimming and doing laps again. Also it would be nice to get back and doing power walks again, without panting like a dog !

I will keep you all updated as I get more information.   On January 25th, I will get an eye exam through the VA. It's been two years since my last exam, and I think my vision is changing. Busy Schedule !

On January 29, I have a dermatology appt set up.  This is done annually, and I have a few spots that need freezing off, and just a good check over.

More Later !!

Ray

[em]

you use the VA

? I use the VA too. the  mail meds. and computer website are great . Much has changed there over the past thirty years .

sorry to hear about your heart condition. I hope it works out and good health ahead for you . 

My wife's grand mother had a pig heart valve replacement many years ago . if I understand correctly the ex gov of California Arnold had a heart valve replacement

all the best to you

[J.R.E.]

you use the VA

? I use the VA too. the  mail meds. and computer website are great . Much has changed there over the past thirty years .

sorry to hear about your heart condition. I hope it works out and good health ahead for you . 



all the best to you

Thanks !

I've been with the VA since the end of 2009. I know there has been some issues with the VA around the country, but overall, I have received great care with them. But there is always room for improvement.

I like the website, Easy to use and navigate.  Our Palm Harbor clinic, Florida clinic, was shut down , due to the storms that came through the area today.  I think they had water damage. No news of when they will be reopening, But I am OK. No appointments scheduled.

Not sure what kind of valve I will be getting.  I think there are 3 available.  The pig valve, Mechanical valve and the Bovine valve.

More later.  Thanks-----Ray

[OneTampa]

Ray,

Hope the New Year brings you great news and recovery with your medical procedurs and results.

Take care,

OT

[J.R.E.]

Hey all,...

UPDATE 2/5/19

Thought I would give an update.  I had my appointment today with the cardiologist.  My TEE,  (Transesophageal Echocardiography) and heart catherization, will be done on Feb 21st.

Another possible change of plans,....  As of my last visit, I thought I was going to have a Mitral valve replacement. ( which would have been done in Gainesville, fl)  Today my doctor is really pushing for a Mitral valve REPAIR. He believes, that taking everything into consideration, a valve repair, is my best option.

He also mentioned, that he feels this operation should be done at the MAYO clinic, in Rochester, Minnesota.      This really knocked my compression stockings off my feet today !!      The country's best surgeons for this type of operation are there. From what he told Ed and Myself, there are only about a dozen or so surgeons, That he feels have great qualifications to do this.

I really wasn't counting on that.  I was hoping to stay close by. I almost started getting cold feet, after hearing this, and had thoughts ( only thoughts) of scrapping all this and letting nature just take it's course. 

I will find out more after the TEE and Catherization are completed. So ,... I will update further, as more news becomes available.

Otherwise, all is going pretty well.  Still having very mild issues with the feet occasionally swelling.

Still trying to get some exercise daily, and taking everything into consideration, I am doing quite well. !

That's all for now , more later

Ray

[harleymc]

Got fingers, legs and unmentionables crossed for good luck.  Hoping that your recovery will be a good one.

[J.R.E.]

Thanks guys,..

Update 2/22/19

I was at the VA on Thursday morning at 5:30 AM, and had my TEE and heart catherization procedures done. So we were up 3:30 am, and left the house around 4:30 AM. 

Total time there, was about eight hours.


Everyhing went very well. The TEE was done first, and the heart catherization was done second.

I was informed that if a stent or two was needed, they would be placed in there, during the catherization.  Fortunately no stent was needed, and I was informed there was no blockage. ( Will find out more on that on April 2nd.)

I will also find out more about the results of the TEE on April 2nd as well. I can barely remember the procedures being done, but was never in any discomfort.

They gave me lunch around 1:00 PM.  A turkey sandwich, Pears and a ginger ale, and a carton on milk. ( I was really hungry ! ) since I hadn't eaten since, 3:00 pm the day before.

They then released me from the hospital at 2:00 PM. Naturally, Ed drove us home, I was still in la-la land. 

About 4:00 PM we decided to get a deep dish pizza, I then layed down around 6:00 PM and fell asleep quite quickly, and remained in bed until this morning at 9:00 Am.  It was total dreamworld, sleeping last night !



I received a MYNX SEALANT, to seal the puncture in the right thigh vein. I received a card, to keep in my wallet for 30 days. The card states:

" This patient receive MYNX, a synthetic, non-metallic sealant comprised of polyeteline glycol.  MYNX desolves, witin 30 days leaving nothing permanently behind.

The card states to remove the bandage from the puncture site in 24 hrs, which I already did. (Can't hardly see, where the entry punctures are.)

Also ,   No heavy lifting of anything over 5 pounds for 3 days.

No pushing or pulling,

No vigrous activity or straining.

Avoid stairs.

Any coughing, sneezing, straining during bowel movements, requires me to place my hand over the punctire area, and press lightly

No strenuous excercise.


That's it for now !!  All is well ! No bruising, swelling no discharge.

Ray   

[J.R.E.]

UPDATE 6/18/19

ANOTHER MED CHANGE From TRIUMEQ TO BIKTARVY

After speaking with my ID doctor today, another med change will be taking place.

It's been about 14 months, since I started on Triumec.  And the results have been good. t-cells are at 615, per my last labs, a couple of weeks ago.  My CD4 percentage, which had this phenomenal jump to 55% from 13%,  ended up being a lab error.  The actual CD4 % was 18. ( Still better than i've had for over 17 years.)

We spoke about the correlation of Abacavir and heart disease.  The VA has done a study as well.

This was what we discussed today:

"Veteran is a 67 year old Male followed up in ID clinic for management of HIV disease.

Patient has been virologically controlled with undetectable viral load, improved CD 4 counts and percentages and is currently on ABC/ DTG/3TC (  TRIUMEC )  , Since april 2018.

Slight increase in serum creatinine per recent labs CrCl 50 mL/min. PT was previously on NVP/ABC/3TC.

Of note, pt. with history of severe MR, Hyperlipidemia,  and HTN.

There has been conflicting evidence regarding the association of abacavir and potentiation of cardiovascular disease.  Many of the early published claims were based on observational studies with significant bias . Although some recent literature reassessed the effect of abacavir,  on CV disease and found a two-fold increased risk, this was in a cohort study (pmid-26536316 ) with limitations of statistical power.  A large VA study, published in CID with over 19,000 patients evaluated the risk of acute MI and CVA associated with cumalitive use of ABC and found no association with abacavir use ,and in fact, a lower risk of CVA. (pmid-21653308.  A 2011 FDA meta analysis of 26RCTs found no association between abacair and myocardial infarction.


The evidence is still conflicting and it is impossible to refute or confirm a causal relationship  of ABC in pts with high risk of CV disease if suitable alternatives exixt.
Others may feel comfortable using ABC regardless based on the literature. Other clinicians may maintain the drug in pts stableon the regimen unless a compelling indication to switch exists.

Whether Biktarvy is a better agent for this patient is subjective: if seeking a switch, would  inquire whether TDF, was previously discontinued  due to tolerability issues.  Would confirm stability of renal functionbased on most recent increase inSCr to1.45 mg/dl.

Additionally , would ensure patient is able to take Biktarvy simultaneously with calcium/vitamins  and with FOOD every  day, to mitigate drug interaction."
Time spent 70 minutes

Thankyou for the opportunity to collborate on thie management of this patient
Signed :  XXXXXXXXXXXXXXXXX
acknowledged by :XXXXXXXXXX


=====================================

I have decided to give BIKTARVY a try for a while and see what happens. 

[J.R.E.]

Additionally , would ensure patient is able to take Biktarvy simultaneously with calcium/vitamins  and with FOOD every  day, to mitigate drug interaction."


I have decided to give BIKTARVY a try for a while and see what happens.

I also may have to contact the doctor tomorrow, regarding the above paragraph.  I know Biktarvy can be taken with or with out food, so I am not sure of the above statement of taking Biktarvy with food and Calcium.

I believe the confusion comes from the fact that I was on Viread as part of a 4 drug regimen back in 2003.

I stopped the viread not because of side effects or other issues. I sopped it because i could no see taking a 4 drug regimen.  I was on Viread , along with viramune and epzicom, for I believe 4 years, as a four grug regimen.

Meanwhile, I just noticed on the HealtheVet site, that the Biktarvy has been ordered, so I should be recieving it shortly.

I told the doctor, that I still have about 27 days of Triumeq left, that I will finish, before starting Biktarvy.

Next labs are set up will be done after completing 30 days on Biktarvy.



Hope all us well with everyone,..   Everything is going A-OK this way

PS the decision to switch to Biktarvy was mine !


Ray 

[J.R.E.]

Also: One more thing...

The decision to repair the heart valve has been put on hold. The cardiologist, spoke with other doctors, throughout the VA health care system, and other colleagues and decided this is not the time for a repair.

Ray

[leatherman]

I told the doctor, that I still have about 27 days of Triumeq left, that I will finish, before starting Biktarvy

yeah! it never ever hurts to have a stockpile

decided this is not the time for a repair.

is that a good thing or bad thing for you?

[J.R.E.]

is that a good thing or bad thing for you?

Hey,...  At this point in my life, I think it's a great thing ! I am just not ready , to have my chest opened up to fix the valve. I thought I would be more excepting of having this done,  but for the time being, I am doing pretty good.

I am back at exercising regularly.  We're doing our laps every morning in the pool. And, I have no problem, doing them.  I do get a little tired at times, but for the most part, I am OK.

I started developing trigger finger (Thumbs) about 5 months ago.  It's in my thumbs only when I bend my thumbs, they snap at the middle knuckle. It actually came on very quickly, over a period of a couple days. I've also lost a little bit of my ability to grip tightly onto things. Which is a real pain in the ass, when I  am working on my car.

So today, on one of my appts.,  they injected steroids into the base of my right thumb, on my hand.  I have an appointment in 30 days to have it done on my left thumb. I also have some xrays of my hands coming up in a few weeks.  Busy , Busy times !!

The first thing the doctor asked me today, when looking at my hands, was if I was a diabetic.  That this trigger thumb, can be the result of sugar diabetes ( fluctuations) not in control.  But I am not a diabetic, although my glucose, on last labs was 115. Now if I can just loose about 15 pounds, I'de be happy. I have put on some weight this past year ! perhaps because of the Triumeq . 


Thanks----Take care-----Ray

[Grasshopper]

I am on Biktarvy. It can be taken with/without food, however NOT simultaneously with calcium/vit D supplements.

[J.R.E.]

I am on Biktarvy. It can be taken with/without food, however NOT simultaneously with calcium/vit D supplements.

Hi,   Thanks for that !  It's exactly what I have researched.  The following is from the VA ( Healthevet website, and in reference to the Biktarvy:

Prescription Number: xxxxxxxxx
Medication Name    BIKTARVY TAB

   TAKE 1 TABLET BY MOUTH EVERY DAY WITH FOOD AND AT SAME TIME AS ALL VITAMINS/MINERALS/CALCIUM. FOR INFECTION

Fill Date    06/18/2019
Dispensed On    06/20/2019
Status    Active
Facility    C.W. Bill Young VAMC
Ordered On    06/18/2019
Quantity    30
Refills Remaining    2
Expiration Date    06/18/2020



I take calcium supplements and Vit D, and fish oil for years,... but I am not going to take these along with the Biktarvy, at the same time, despite what is stated on the My Heathevet website.  I have never taken supplements, at the same time , when I take my medication.  There can be a 8 to 10 hours difference for me, after I take my medication to when I take my supplements.

Thanks again----- RAY

[J.R.E.]

 

OK,....  I received the biktarvy in the mail, just a little while ago.

The following, is stated on the insert that came with the medication.


"Take this medication by mouth, as directed by you doctor, usually once daily, with or without food.  If you are taking antacids,that contain Aluminum, magnesium, or calcium, take this medication on an empty stomach, 2 hours before you take these antacids.  If you are taking Iron or calcium supplements, take them WITH FOOD, at the SAME time you take this medication"


Just for the record, I don't take antacids.  I guess the problem i am having in understanding, is...  If calcium in the antacids need to be taken on an empty stomach with a 2 hour difference when taking Biktarvy....   Why then can I take calcium supplements on a full stomach with this medication.

None of this makes sense to me, or maybe I am having a senior moment ! 

Unless the calcium in the antacid acts differently then the calcium as a supplement, towards Biktarvy.


So I think until I see my doctor again, I will take this as stated , On a full stomach, with Calcium . LOL I feel like I am having a brain fart ! 



Ray