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Concerned wife here...husband suffering daily. Wish I could do more.

tishatemple
Posts: 3
Joined: Apr 2013

my husband had a partial nephrectomy in Jan last year. We are coming up on one year Anniversary and the swelling and pain in his side. The bulging where he feels like his insides are falling out. All the while, his drs all said well I m not a "muscle dr" ! it s just the muscle healing. I see him suffer every day, working, pushing through. And no one validates our opinion that something is NOT RIGHT. We have used our intuition more than once and it was right on. I know this time it is too. I m so frustrated and not sure where to turn. We have a new dr appt in a couple of weeks, but we know it won't "cure" this part  of post op issues. Anyone else have issues like this after surgery? I ve read a lot of people do. Thank you for reading my vent, and hugs to all fighting this battle.

garym's picture
garym
Posts: 1651
Joined: Nov 2009

Hi tisha,

I was going to suggest that you search for a thread here that deals with the buldge problem that many have dealt with following surgery, but I see from your other post that you have successfully done that already.  So this is just a welcome to our little club, we're here whenever you need us and for whatever you may need, that includes a place to vent as needed, we've all been there.

Hang in there,

Gary

angec's picture
angec
Posts: 664
Joined: Mar 2012

Hi, sorry for so much suffering and pain.  Has the doctor checked to see if he has a hernia?  Does he get 3 month whole body pet scans?  Is he seeing an Oncologist? I haven't see your other post that Gary referred to, it may answer these suggestions.  A new doctor sounds like the way go go!  I hope you get answers. xxoo  Vent away anytime, we all truly understand!

icemantoo's picture
icemantoo
Posts: 1654
Joined: Jan 2010

While bulging is normal for a few months it should not last as you descibe it for over a year although there still may be a little swelling.

Definately check it out with a new doctor..

 

Icemantoo

I am alive
Posts: 229
Joined: Jul 2012

Have you called back to the new doc's office to explain that your husband is in considerable discomfort and ask if there is any way they can fit him in the schedule sooner? Squeaky wheel gets the grease and all. I have found that it pays to speak up, push (gently) a little, and sometimes show them the emotional, frightened human your are - we try so hard to put on the stoic, brave face and all, sometimes to our own detriment.

tishatemple
Posts: 3
Joined: Apr 2013

Thank you all for your support. I have also found being squeaky will get the attn. We aren't new to dealing with tragic event. We are the parents also to a stillborn son ,as well as having four sons to raise :) I have learned that you must be your own, and your family's advocate for the best care, but sometimes it's hard. He isn't currently seeing an oncologist, he had surg. done by a resident at a local university hospital due to our issue of no insurance. We belive a couple of months ago he may have suffered a mild heart attack as we were told by that er it was pleuricy. It's been such a roller coaster, we only knew two weeks before he had the tumor removed that he even had kidney cancer. I think just now almost a year later, i m suddenly realizing how intense our journey together has been. I do have so much needing to vent, I have a support group of my own for parents of "Angels" but this is just different. My fear is still the same though. Thanks for listening. He had only cat scan at his six month post op and it showed clear even though the bulge was there then. I just know this isn't fair for anyone. To not have to have chemo or any other "treatments", just this "miracle" surgery and your cancer free. I appreciate that he doesn't have cancer, I really do. I just hate seeing him in pain after being through so much, he deserves a break. We all do <3

Eskimo lily's picture
Eskimo lily
Posts: 43
Joined: Aug 2013

Hi tish,

 

I'm really sorry to hear about all this pain your husband is going through.

Usually patients who have kidney cancer and have surgery to remove the tumor, they will still follow a special urological oncologist for follow-up scans. Have you had your 1-year check-up yet? If not, I definitely recommend finding a urological oncologist to follow...and also, definitely go back to see the surgeon!

angec's picture
angec
Posts: 664
Joined: Mar 2012

Tisha, my heart goes out to you! I am sorry that you have both had so much to deal with!  And the truth is, when it rains, sometimes it just pours! But what doesn't kill you will make you stronger and you both will get through this. We are there to make sure of that! 

I have a question. Do you have your husband's path report?  What exactly did he have, the grade/stage/size? Is there any way that he could have a hernia there? Is there an option for you to just pick him up and go to the emergency hospital and see what their opinion is?  I understand you do not have insurance, but are you seeing the same resident doctor who did the surgery on him?  I think a new scan now is in order. Maybe this can be done if you go to the hospital.  I would give it a shot!  They can also check out his heart, i don't think they can turn you down. He should not be in this much pain.  The sooner you look into it the better.  Waiting for a new appointment migt take awhile but the hospital can scan and investigate on the spot.  Nothing to loose, no?  He does need to see an Oncologist regularly and scans more often if possible, this is usually done at least for the first few years, then they space them out more as time goes by.  I hope you get some help. I will pray for your family. Sending hugs! Hang in there!!!

 

Galrim's picture
Galrim
Posts: 278
Joined: Apr 2013

Flank bulging is relatively common, but not after a full year. It could indicate a range of different problems, hernia being the most obvious one. You should definitely get another opinion ASAP.

/G 

angec's picture
angec
Posts: 664
Joined: Mar 2012

Hi Tisha, just checking in to see how things are going. Were you able to have your husband checked? Thinking about you both and praying for you!

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