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DWT back home from HIFU treatment

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Posted 10/9/2006 4:54 AM (GMT 0)
Sl,
You poor dears. Such anxiety you both have had. I wish there was a simple answer to all of it but there isn't right now. Notice I kept an open end by saying "right now"? It'll get better.

As for his cath site. I'd have to see it to know whether its necrotic. Necrosis is usually black. If its black and or green, worry. If the site is weeping but it's a still pretty clear then it's still okay. Keep it clean and dry. Room air exposure will help. When he's just sitting around it is perfectly okay to leave it open to air. Sometimes being covered all the time keeps in moisture causing more weeping.
Expect a little redness and drainage. It's still a newer site. It may even have a little bit of extrusion of what looks like tissue poking up immediately around the site. That's granulation, healing tissue actually. If the tissue is pink and healthy that's good. I hope this is what you're dealing with. If it is, it is one less thing to be super stressed over. Hopefully that darned thing will come out this week.

Try to rest and deal with daytime stresses during the day leaving bedtime for rest. Sounds hard but you need to, both of you.

Hugs to you both, Swim
Posted 10/9/2006 11:58 AM (GMT 0)
yes SL & DWT - I ditto what others are saying. whine (vent) all you want and know that we are keeping you in our thoughts and prayers. I hope you can find some answers locally and that things will get better soon. here's a hug for both of you! kat
Posted 10/14/2006 2:37 AM (GMT 0)
Please come back and talk to us. I am not helpful, but many others here are. Use them. They want you to. They can't fix your problems, but they can help you deal with them.

Regards,

Bill
Posted 10/14/2006 3:47 PM (GMT 0)
Quote from Bill on previous posting…. Please come back and talk to us. I am not helpful, but many others here are. Use them. They want you to. They can't fix your problems, but they can help you deal with them. Regards,    Bill   Hi Jetguy,   Not helpful????   How untrue…..     Bill ~ each time you post you are touching a life in a special way.     You may not be talking about a specific stepping-stone you are on in your path…   but you are taking the hand of someone who is on a stone that may be a little wobbly for them…. and the caring and kindness in your postings come through loud and clear.   In Friendship ~ Lee & Buddy
Posted 10/14/2006 3:58 PM (GMT 0)
DWT & SL,

Our thoughts continue to be with you.... We keep you close in our prayers and hope that each day brings a little more healing that you can see and soon this will be behind you both.

You chose a route not many know about ~ but we are still in the same boat.... Keep rowing because there is dry land ahead.... you've hit some different waves that kinda kept you back..... but we are here for you.

Remember….. talking it out and getting it out of your system is healthy. It’s like crying….. it’s healthy…. So lean on us…. We are all here for you!!!

In Friendship ~ Lee & Buddy
Posted 10/17/2006 3:34 AM (GMT 0)
short update on DW. His catherter is still in, now 25 days. Its working its self out of the abdomen.

No uriny has been flowing thru it for 4 days. So we called the nurse of Dr, Suarez, she tells us go the the Emrgency room snd have it taken out.So we did, but when the ER doc called her to confirm on how to take this catherter out - she tells him it has to be a Uro with Ultrasound testing and other bladder tests have to done before it can come out. We looked like idiots. Not only did we spend 5 hrs in ER which will cost $$$$$$$, we took of work and lost income. AND THE CATHETER is still in. DW has developed an infection and if this "thing doesn't come out quickly, he will suffer with some long lasting consequenses in every department. We just can't find a URO who wants to take this suprapubic catherter out even if it will kill the patient. We are at the point of thinking of taking it out ourselves. What happened to the medical profession: healing, helping eliminating pain, compassion doesn't seem to exsists anymore. We are at a loss. Selfhelp seems to be the only action possible before his body is overun by infections. THis is not what we envisioned

after the HIFU treament. NO AFTERCARE AT ALL. Anyone have any ideas on what to do?

SL

Posted 10/17/2006 12:05 PM (GMT 0)
oh goodness SL and DWT! I can't imagine that you can take the catheter out yourself. what was the original plan from Dr. Suarez? who was supposed to take it out? if need be (and I know this is extreme) fly back to him and have him take it out. if that is not an option (and I doubt that it is), why can't your urologist take it out? what he supposed to anyway? I hope some others here have some better advice....my thoughts contiue to be with you....kat
Posted 10/18/2006 10:28 PM (GMT 0)
Update on DWT
hurrah the catheter is out as of 12:00noon today. It wasn't even in the bladder anymore and hadn't been for the past 4 days. 1mm in the abdominal wall only. I could have taken it out myself. If it hadn't been sewn in, it would have fallen out by itself. It took the ER to tell a Uro that it had to come out no matter what and now. Otherwise it be still in Dave. No we have to find a Uro to take over the follow up and continue the watch. Now this will be like a needle in a haystack. Hope we can locate someone locally before there is any trouble. DW already feels so much better, the mental anguish about the refusal of the local docs to take the catheter out was so exhausting to him and me we can't describe it. DW is sleeping now thank God. I hope things will get better now. All in all not what we had expected, believed and been promised from HIFU. To bad, it's one of the procedures of the future. Will keep you informed about the PSA in 2 mos from now. Hope it comes back good.
Now next step is erection. May have to come back to this board earlier for advise. I am keeping my fingers crossed but after a while that my cause pain, so we'll see.
SL
Posted 10/18/2006 10:56 PM (GMT 0)
SL,

I'm so glad to hear that "Hang" is finally out and where he belongs....in the trash!!  DWT will sleep so much better now that he doesn't have that thing to worry about when he turns over anymore.  I know Curtis slept so well the first night it came out.

We have another appt. with the Ur on the 30th...Not sure exactly what for, but we will see.  Don't think a PSA will be for a couple of months yet either.

Anyway don't be a stranger..come in and let us know how things are going with you and DWT.

Posted 10/19/2006 12:35 PM (GMT 0)
DWT and SL,

YEAH! it's gone!! now you can really concentrate on recovering and moving on to the next step. it's wonderful to hear good news from you. we're also working on those erections.... patience....patience...patience is what I keep hearing. gggrr!! a friend who went through this several years ago told me that if there is any life down there, it will come back. :)
Posted 10/19/2006 3:52 PM (GMT 0)
Well some good news indeed! Glad to hear things are finally looking brighter for Dave. He's had enough crisis for a looong time. Both of you have. Time to take a breather and start to count a few blessings.....a trick that is very hard to do when eveything is crazy. Maybe now you can rest a little!

I think you will find a local Uro now. Maybe...hopefully, he won't need one for much more than that pesky PSA test! Try the University of Indiana as a last resort. Their the one's doing phase III trials on HFIU.

You may have to offer a waiver of any liability involving the urinary tract and prostate cancer treatment before anyone will help but I think someone will. I'd try to get his foot in the door before saying too much. There is also the University Medical Center. They won't turn him away probably. There again, you need to offer a waiver to these people if they get the least bit nervous about treatment. They're all staring a lawsuit right in the face in their minds and want no part of it SL. Docs actually believe people want money, again a delusion, not answers. Since no one can give you any answers for the HFIU Doc, there is no reason to question them.

I'm not sure (I haven't seen the paperwork to read it) but in this country, what that HFIU Doc did is flat out abandon his patient. It is his responsiility to make sure hi patient has a way to receive follow up. That's why we're so picky in this country with FDA approvals. Physicians (in theory) held to account for treatment protocols. At the very least, the Attorney General's Office does need to be made aware of the man's presence. My guess...they already know! Start with Harold Myers office consumer's division. When you both are up to a complaint the AG should at least be made aware of the Doc.

Heres to a gone cath...a toast to many great days yet to come! Swim
Posted 10/21/2006 2:36 PM (GMT 0)
Hi to all you nice people,
DW is totally continent now. this was never a big problem. He is back at work full time, does get tiered in the afternoon so. Now that he is finished with all his medications, he will be going back to selenium, etc. He didn't wanted to mix to many of them in case of bad reactions.
Having a little problem so, maybe swimom knows, the suprapubic catheter opening has closed on the outside as I can see, however he is still leaking enough urine from it to get wet enough to be uncomfortable. Not really wet, just damp. I understood that the bladder at least would close within 48 hrs. Doesn't seem to be happening. These things always happen on the weekend. Any info on this out there? The cath was in for 1 month, still it should have closed by now. I keep a dressing over it, but Dw is getting very nervous about it.
We finally found a Uro here in town, the one that removed the cath. who is willing to take over the follow up and be DW doc from now on. ONE MORE milestone achieved. Sure makes us feel better to now there is someone. The HIFU people have all over sudden started to respond very fast, even called last week to check how DW is doing. I know for the last few days, that many of their patients have complained on message boards and to their company about the lack of follow-up, etc. One patient told me that the Clinic in Santo Domingo is 3 levels below the public hospital in Karachi, Pakistan. Now that's really scraping the bottom of the barrel. We believe that when HIFU becomes FDA approved in the USA things will change for the better. All in all 4 weeks after HIFU Dw is in pretty good shape. Strange how one's outlook changes when things get better.
BUT there is still the erection and intimacy problem. Can only hope this will get better too. He is to start Cialis today so we'll see. Hope there will be a smile on both of our faces. It is a very important part of our live, always will be. May need some advise for me how to handle this part, Dw would never ask
SL
Posted 10/21/2006 8:25 PM (GMT 0)
Hi DW & SL,

Very relieved to hear that DW is really on the mend, and hopefully soon the body will heal the leaking from the catheter sight too. The best to you both, and have happy Thanks Giving.

Glen
Posted 10/21/2006 10:11 PM (GMT 0)
SL<
I don't think the minor leak is a week end panic situation. It is a question to ask on monday in order to relieve your concern. I don't see it as something to be overly worried about but you are, so ask ask on Monday. I suspect some sites may take a little longer than others to close while a few may need a nudge.
It took 5 years (instead of a month) for one of our son's holes to close once his ear tubes were out. Turned out to be his saving grace. I don't think the same applies to a cath though. A simple question will get you the answer you need. Glad things are finally coming along! Swim
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