other medical issues before a transplant

[trojan ska]

I am scheduled for a transplant on Jan 9th. My aunt was approved to donate a week ago and hopefully everything will work out fine.

Unfortunately I have some other symptoms that I am afraid might mess things up. For the last couple of months I have felt soreness in my left testicular area and occassionally have small amounts of blood in my semen.

I also have had sores in my nose that have not been able to heal left over from when my Lupus was flaring up over a year ago.

I guess I'm wondering if this stuff would derail a surgery or not if they are not cleared up by the 9th of Jan.

I've been on antibiotics of different sorts for both issues for over a month and neither case is resolved or showing signs of improvement.

My cousin thinks my rose is having problems healing because of the prednisone I'm on.

My urologist doesn't think the other issue prostatitis but my nephrologist suspected it was at least initially. Problem is that kidney infections, prostatitis, urinary tract and bladder infections all have similar symptoms.

My creatinine is 8.0 at this point and my phosphorous has been high until I started taking tums recently. They haven't started me on dialysis yet so maybe all of this stuff is related to me being so sick in general.

Has anyone else had similar problems at this stage of kidney disease. Maybe I'm freaking myself out but I really hope I can have this surgery. It would be distracting to have to accept this kind of setback at this point. Maybe it's unrealistic to think too positive when you get good news because you'll let yourself down harder.

If anyone could relate it would be appreciated

Thanks everyone

Scott

[Chris]

I would bring this up with your transplant center. You do not need to put the new kidney at risk if it is avoidable. First questions they asked me prior to transplant surgery is if I have any sores, been sick, near anyone sick. Your transplant center needs to know and may have someone else check you out there to clear you. Angela515 has lupus also and may have some input here. But better o be safe than sorry. Don't go there expecting a transplant and then tell them your concerns and have the transplant put off, that can piss off relatives too. The transplant center may just adjust meds during transplant procedure to compensate your on going problems, but again let them know ahead of time.

[trojan ska]

I would bring this up with your transplant center. You do not need to put the new kidney at risk if it is avoidable. First questions they asked me prior to transplant surgery is if I have any sores, been sick, near anyone sick. Your transplant center needs to know and may have someone else check you out there to clear you. Angela515 has lupus also and may have some input here. But better o be safe than sorry. Don't go there expecting a transplant and then tell them your concerns and have the transplant put off, that can piss off relatives too. The transplant center may just adjust meds during transplant procedure to compensate your on going problems, but again let them know ahead of time.

To a large degree my frustration is because I have in fact let the transplant coordinating Doctor know about this stuff and he threw it back in the urologist's court (at least as far as the blood in the semen goes). Unfortunately I had one of those days yesterday where everything that could have gone wrong did.

When I called the urologist his nurse left him the message that my symtoms had not subsided. He called back and I missed him. He told me they didn't want anything to hold up my surgery and to call back the office and they would be more than happy to asisst but he would be gone all next week. As soon as I got the message I called back. The same nurse explained he left and his pager was off. I explained his message and she became argumenatative when I asked for assistance. I asked if I could see another doctor sometime nexrt week and she started to laugh at that idea since they were all booked up. I explained once again that his message was that I was to call and recieve some assistance but she refused to help me since he left her no instructions. She wouldn't offer any solutions of any sort. The nurse started telling me I needed to bring all of this up with the transplant team even though I explained that they sent me back to the urologist.

Anyway, maybe I'm just ranting but I felt like tearing my eyes out yesterday because of these doctors and nurses who just shove you back and forth while no one seems to want to pony up and help.

[nursewratchet]

Since the transplant team referred you back to the Urologist, try to talk to the transplant Dr.  Say you are having trouble getting any contact with this doc, and can he make contact for you, or call another urologist.  The doc's always know a back way to get in touch with each other.  If I tell the neph at my center that I can't get in touch with another doc, he is on the phone himself.  This definitely needs to be addressed, although, Predinisone will sometimes cause bleeding, so don't panic unnecessarily.  Keep posted...

[trojan ska]

Since the transplant team referred you back to the Urologist, try to talk to the transplant Dr.  Say you are having trouble getting any contact with this doc, and can he make contact for you, or call another urologist.  The doc's always know a back way to get in touch with each other.  If I tell the neph at my center that I can't get in touch with another doc, he is on the phone himself.  This definitely needs to be addressed, although, Predinisone will sometimes cause bleeding, so don't panic unnecessarily.  Keep posted...

I went on my urologist's website and found a conact form. I decided to sent this message:

Hello, my name is Scott Hughes and I have a kidney transplant scheduled for Jan 9th at IU Med Center. I am a patient of Dr. Schlueter and have been seen  for blood in my semen and tenderness in my testicular area. I tried to reach him on Friday. He tried to call me back personally on Fri and said "I don't want anything to hold up your surgery please call us back and we will do everything we can to assist." He was very sincere in his message and directions for me to call back for assistance. When I called back and relayed his message and directions his nurse would not help me in anyway. I explained his message and she said he provided no instructions on what to do and that "he had ridden off into the sunset for a week". I asked If I could possibly see another doctor sometime next week and for some unknown reason she started to laugh at that idea since the office schedule was booked already. I proposed that maybe an RN could initiate some type of testing or additional treatment for my symptoms. She said she was an RN but since she had no instructions on what to do she could not help me. She started to tell me that if I was going to have a transplant I needed to take my matter up with them even though I explained to her that the transplant doctor strictly requested I follow up with my urological symptoms with my urologist since he is the expert on the matter. I truly try to be an understanding person but often times can be a push over. I slept and thought about how to deal with this issue and thought I should move on and wait till my Dec 31st appt with Dr. Schleuter but I feel that it would be ridiculous to allow this to happen when your office has the resources and staff to help me prior to that time in some manner. Maybe I cannot have a formal appointment but surely someone can possibly help me on Monday? I simply refuse to believe for a second that Indiana Urology's staff and physicians do not want to help me in any way shape or form while Dr. Schleuter is away. I refuse to believe that they want to shove the responsibility back towards another doctor's office and cannot have a physician or RN set up additional screening or treatment of any kind while my doctor is out of town. I cannot imagine why his nurse would not offer any type of solution other than bascially telling me to go away. I will with no apologies admit that I became curt with her once I could see that she would be of no assistance. If I was curt or frustrated with her in anyway it should not be reason for refusing to offer me assistance. It's not everyday someone has a kidney transplant and often times we patients feel helpless when we cannot find assistance. The doctors and nurses are all we have to assist us and if they will not help what else can we do but plead for help. I am writing this email hoping to get some sort of assistance so I can address this issue so as not to disrupt my transplant plans. Could someone please help me that cares and understands? Surely this is not the type of assistance Dr. Schleuter had in mind when he wanted me to call back.

[nursewratchet]

Taht is a great email... The Dr. I'm sure has no idea that his nurse is refusing you.  Hopefully you will get a response NOW.  If not, I would go to the emergency room.  Tell them about the transplant coming, and your new symptoms.  They will get a urologist to consult on you .  Godd Luck!

[pelagia]

great e-mail.  you might also call and ask to speak with the office manager, assuming the office is big enough to have one. 

[Chris]

And still follow what nurseratchet advised, call transplant center and relay what happened. Either talk to the coordinator or the doctor. However, I found it easier to get a hold of the coordinator than it is with a doc. Getting hold of a doc from the receptionist is going thru a loop whole. Talk to the coordinator and sh has more direct access to the doc I have found out, well at least here it was.

Good Luck

[monrein]

Excellent email.  I really hope they do what's right. 

[nursewratchet]

Taht is a great email... The Dr. I'm sure has no idea that his nurse is refusing you.  Hopefully you will get a response NOW.  If not, I would go to the emergency room.  Tell them about the transplant coming, and your new symptoms.  They will get a urologist to consult on you .  Godd Luck!

   I promise I know how to spell!!!!! I apparantly just can't type. 

[chris73]

No you dont want anything to postpone transplant esp. other health issues that can be corrected ... b4 mine i went to meet transplant surgeon a week before set date and he put me in hospital right then because my bp was too high and refuse to operate  until it was under control....so its a huge let down knowing  your  date has been moved because other health issues that could have been taken care of before hand . So by all means worry the DR to  death to help take all other problems so the transplant will take place....and its a real blessing that u dont have to take dialysis .. hope everything moves forward so none is needed...God Bless ....Chris

[nursewratchet]

If you just show up at the ER, tell them about the blood in your Semen, and painful testicals, they WILL work you up.  A Dr. can't turn away symptomsif they are in front of him, it's illegal.  Good Luck...

[chris73]

like to know what u found out.....i had that too once or twice ...Dr's didnt find anything just curious what they tell you..thanks

[trojan ska]

Thank you everyone for sharing. I had an appointment with my general doctor. Her office got me in quickly. She is treating my nasal infection as a staph infection. She gave me a bactrim ointment to apply 3X daily. Also she gave me levaquin to replace the z-pack and more cipro the other doctors prescribed. From reading online she is on the right track to treat the staph. After reading about staph I learned that while it is commonly benign on 20-30% of the population it can infect people with weak immune systems etc...very young, very old people. Also it is bad for people like me on immune suppressant drugs.

My GP said it wouldn't hold up the surgery. I hope she is right since she is not the one who is to decide. I also have learned that it is hard to get rid of. I've read people online say that even using the right antibiotics does not always work. Appaently even an IV antibiotic called vancomyicin doe not always work as more and more staph infections are affecting hospitals and especially transplant centers. I also read that a certain staph resistant strain in people who use vancomycin before or after a transplant get a condition called Vancomycin-Resistant Enterococcus.

Maybe I'm getting scare over nothing as I tend to over analyze. One question....are all staph strains are the same or not? second....What else can I do to prevent and/or fight infections other than antibiotics.

To the first question I see that there are different strains of staph. Does any one know if i am correct to assume that the staph infection I have is or isn't necessairly related to VRE?

The second question I did a little shopping and the health food store. I bought some tea tree oil. It apparently in some studies is just as effective as the bactrim ointment. I also bought some green tea pills and oregano oil capsules as well as pure cranberry juice that you dilute with water. They might all together be a good complementation to traditional antibiotics.

Could it hurt?

Might there be someone on our forum that has had a transplant that knows more about infections and what they have done to help combat them?

I appreciate the feedback on my email to the DR. I was afraid it would piss them off and that some of you might have thought it was too aggressive. Maybe it did and was because they never did call back in any way...which is disappointing. I had more faith that someone would call me back but to date they have not.

[Chris]

To the first question I see that there are different strains of staph. Does any one know if i am correct to assume that the staph infection I have is or isn't necessairly related to VRE?

The second question I did a little shopping and the health food store. I bought some tea tree oil. It apparently in some studies is just as effective as the bactrim ointment. I also bought some green tea pills and oregano oil capsules as well as pure cranberry juice that you dilute with water. They might all together be a good complementation to traditional antibiotics.

Could it hurt?

IFor my microbiology class we did labs and reports on this, that started with the topic MRSA (which I can't rember what it stands for at this moment). So for the first question,Yes. There are many different strains thus why there are so many antibiotics. Some antibiotics are similar, thus they do not work and we switch to another one we hope that works.

As for the second question, what you bought doesn't seem like it would cause a reaction to the bactrim. However some items can effect a prescribed medication. That topic maybe in here, but I also read about it in Time Magazine and the Chicago Tribune a few years ago. The transplant center will advise you a little on this to (well mine did). I will try to find those article and post here.
Hopefully this will clear up soon. Don't get yourself psched up about this, there are to many things in life to do than worry.

Oh, they used Gancyclovir IV and Cytovenne to treat CMV I got from my donor, while other transplant patients I have read were on something with a v I can't remember. It might be the same stuff your on, but I am not sure. I have to read over some old post.

[breezysummerday]

The best way to tell what type of nasal infection is to
take a nasal swab. I hope your nurse did that.  You would
get the results back in a few days.  On a side note,  Cipro
changed my intestinal flora.  Killed off my staff infection, but
gas and trotters for a few days.  Keep taking all your meds for
the recommended number of days.  I would go to the ER
like nursewratchet suggest since it takes a couple of days to
get results back.