DWT back home from HIFU treatment

Hi to all,

DWT and Sl are back home. DW is doing better today, he has been very weak after traveling for 2 days on airplanes only 2 days after the procedure. Santo Domingo wasn't what we expected or what it had been described to us. It will take sometime to write about it objectively. Dr. Suarez is the best for HIFU but the outside support was unbelievably bad. I will in a few days write about it. DW is now moving around the house but has to sleep a lot to regain strength. He is working on his suprapubic catheter so it can be removed next week, hopefully before he has to go back to work. For DW HIFU hasn't been as easy as advertised.

DR> SUAREZ SAID THAT HE GOT ALL THE CANCER AND THAT IS GREAT.

PSA WE WILL FIND OUT IN 3 MOS

SL

 

SL,

I'm so glad you are over with the worse part...sure wish we were.  I'm also interested in hearing about the procedure and your ordeal.  It's wonderful that the cancer was contained in the prostate..Get back to us when you get a change and Welcome Home!!!

Hi DWT & SL,

You are Home! there is nothing better for healing than the good ol' sights, sounds, smells, and those comfortable slippers that took 2 years to break-in just right. So hopefully lots of rest for you both, and a very speedy recovery.

Glen

 SL!!

I was getting concerned. So glad you posted. Sounds like DW did fine considering the road trip involved.  Big hugs to you both!

Swim

DWT and SL,

hang in there! each day will be better than the one before. Jeff only walked around the house because it was raining for several days after he got home. something is better than nothing. is the doctor available for him to call and talk with if he has concerns? thanks for staying in touch and my thoughts are with you. kat

Glad you're back home and on the mend. Remember, the trip home must have taken a bit of a toll on DWT. I know a five-hour drive two days past, did for us.

Remember, too, that regardless of which treatment is selected, it's still a major procedure, and this is a major disease. Everyone heals at a different pace, and DWT has to listen to his body. He'll get there. I know he's glad you're there for him.

Hi to All of you concerened and well wishing people,
It's amazing how the body doens't want to heal if the mind doesn't will it. DW and I realy believed that HIFU would let DW return back to work with in 3-4 days after the treatment. Having a gut feeling about that this might not be possible I pushed him do everything possible to get as much vacation time as possible. In 3 days he has to be back at work and he just will not be able to do this. He is still so weak and also diappointed about the length of time it takes him to recover. It's now 9 days after HIFU. We talked to a lot of men that had had HIFU and were able to return to work within 3-4 days. NOT DW.
He seems to be electrolyte depleted and now is drinking Gatoraid by the gallon to make him feel better and water with electrolites added. I believe this depletion started after or during the HIFU procedure. He was rolled out of the O.R. with the Saline drip still 3/4 full but it was kinked and didn't work. Pointing it out to the Post op room nurse who didn't speak any english - she shrugged her shoulders and walked away without doing anything. I had to literaly fight to get a blanket for him with bad and very little Spanish and was told that they didn't get paid to take care of the HIFU patients, that much I understood. I guess I was suppose to pay them - I didn't even think of this at the time.
Anyway finally got a blanket and direction to a watercooler in a very dirty waiting area to get water for DW. They don't wear gloves there for anything, nor did they seem to wash their hands, no soap, no towels. NO SANITARY, STERILE conditions what so ever. I am still in shock over the conditions at this Abel Gonzales Clinic in Santo Domingo. DW and I inspected it the day before but only looked at the reception area which has marble floors, uppolstered
chairs, etc. nice and clean and inviting. UPSTAIRS however it was like something I had never seen before - that, we found out minutes prior to the DW treatment. DW wanted Dr. Suarez having been told even by European docs that he is the best - we still believe he is. The conditions in Santo Domingo however were a nightmare for us both. HIFU treatment in Canada and Mexico have such great clinics - not in Santo Domingo. USA HIFU however had no more dates left for this year only Santo Domingo. We had been cancelled from PT. Vallarta and Canada and DW not wanting to wait any longer deceided to go there. Now he is saying we should have gone to Europe
if it wouldn't have been for the doctor we would have at the last minute. I have a minute to minute record of the whole "thing" and just looking at it makes me so angry that this could have happened.
We hope however that the PCa has been totally ablated and his nerve bundles on both sides preserved. Guess the future will tell about both. Sure hope that it doesn't take too long.
SL

SL,
Yep, people complain about rising health care in this country. We could always live in Santo Domingo...whew! Ya know? You describe half of our world's conditions and believe it or not, you didin't see the worst. Close..but not the worst. Hope his Doc is keeping a good close eye on DW.

By the way...DW needs to stop whining and put his mind in a better place!
I have no doubt that he's been in discomfort and the right to feel like crap goes with that! He has to put his mind in order to put his body in order though too. Instead of asking why me....ask why not me...why not be one of the lucky ones whio heal fast. 9 days is still early. GO DWT>>>>>guy, we're all hoping ya work out this demon and get better very soon! Hugs, Vickie

Ellen,
we paid out of our own pocket for a private clinic and treatment. Ins. doesn't cover HIFU. The poeple that went for HIFU in Canada and Mexico all got treated very well. We just happen to have to go to Santo Domingo because the other locations had been cancelled (don't know why) and that's where all the problems accumulated with dirt, sanitation, sterile set up, lack of attention to the patient. I strongly believe that if we would have been in canada or Mexico, DW would be much further along in his recouperation. The lack of attention to what his body needed and the lack of sanitation are playing a big number here. The electricity went out 2x and HIFU needs electricity for the machines. Since we don't seem to be able to get a procedure report as of todate, of course we speculate what has happened. The men we talked to all were fine within 3-4 days DW is not. With all the precautions and cleanliness
I have around him and catheter, it now seems to get slowly infected - its a suprapubic one- his local doc is getting worried about the catheter being in to long. So on and on goes the story, hope this is all over soon. But it was his choice to do this. All the best to you 2
SL

DWT & SL,

You've got to keep those spirits up to beat this PCa. I pray all goes well, and that there is no infection problems.

Glen

Update on DWT progress
well its a step back. I was to finally get the suprapubic catheter out tomorrow after another delay and now NO GO. The urologist without even seeing him, just based on a phone conversation and urine elimination chart (he is to be able to go the regular way up to 80% of tha bladder contens, he is up to 75% for the past week+) now tells him the catheter has to stay in another 10 days. WHY? Because its better that way. I am so upset at this answer and so is Dave. He has to go to work no matter what tomorrow with a urinary bag strapped to his leg.
I, Sl, called back to talk to the nurse, the doc doesn't want to talk to me I ask to many questions, I told her that Dave has been going the regular way and why leave the catheter in, maybe get an infection. She stold me to have him shut the catheter off and just urinate regularly. SO WHY LEAVE THE CATHETER IN??? Please someone give me an answer. I can't get it from the urologist. He let me know via his nurse to call Dr. Suarez for the reason. Its starting to sound like a secret of some sort, what happened during the HIFU treatment is now my question. If anyone has an answer about this catheter situtaion, pls let me know.
SL

DWT update on the catheter situation
we sort of, but not enough have calmed down. This catheter has come like a brickwall between us. I am the one cleaning it and trying to keep it healthy. Necrosis (breakdown of the surronding skin tissue) is setting in slowly and in 10 days it will be one big problem. From my experience, the dead tissue needs to be cut away and sutures put in to get the abdominal wall to heal together. Swimom what do you say? The bladder will evtually close but the abdominal wall is another things with necrosis having set in. I would like to spare DW that addidional minor surgery. Today, finally DW promised he will go to our primary care doc and have him find a local Urologist to take out the catheter this week.
I called to Dr. Suarez and left a message to pls get back to me with an answer to this "its better this way"
No reply as of today. I would have never expected such a lack of aftercare and involvement by his team. We still believe that HIFU is the future and Dr. Suarez is the best, but everything else leaves a lot to be desired. Too bad for us. DW went to work for 1 day last week, 1/2 day and came back weak and tired. Hopefully Monday will be better. At the moment everything looks black again, no light at the end of the tunnel. I just htis will change. It seems that recovery period is as bad as the time before the procedure. 3 weeks down the road we are both mentally and physically exhausted again. How did you girls do this. I have to be at work at 7am and don't get home until 6pm. I clean his catheter wound, because he can't see it, before I go to work which takes a good 45 min. So now I am whining, I know... It seems to help me however.
Hope all of you that are still recovering have a easier time. Get well quickly
SL

Hi SL & DWT,

Boy, it sure sounds like you two are having a heck of a time.  My heart goes out to you.  It's hard enough to go through these procedures alone, let alone having any complications.  It sounds like it would be a REALLY good idea to have your primary doctor refer you to a urologist and as soon as possible. 

Just know your not alone.  It is a very hard stressful time for you both and its great to have a place like this to vent.  Keep your chin up and know everyone here is pulling for you both and keeping you in our thoughts & prayers.