Scared

[cariad]

I am so shaken right now.

I was watching a little video on the computer with the kids and I noticed a very solid mass on the side of my neck - like a tumor. It is extremely painful to the touch, though that entire side of my neck aches. I am sitting here with no GP I feel comfortable with, no nephrologist I can phone, and the nearest doctors I trust 2 hours away. I have an email in to the research nurse and surgeon telling them the problem and that I will be calling tomorrow to see what they recommend. I think it's going to be a really long night for me.

[YLGuy]

Oh Cariad,
I am so sorry.  It might be worth the two hour drive just for the peace of mind.   

[rsudock]

sending you courage, hope, and strength......hang in there!

xo
R

[boswife]

Im sure your 'lump' is probably somewhere else, but just encase and to even possibly give you some other reason for lump i'll tell you that....   for 3 days now, the glands on the right side of my throat are swollen,(feels like a solid tender mass) my neck hurts on that side, and throat on that side hurts.   Do you think yours could possibly be caused by  swollen glands? They're right under the jaw line up toward your ear.   I hope that though this hurts and could be like a strep infection, it's better than some other things. 
just trying to offer some possible 'other' reasons..

[monrein]

Sending my hope for some peace of mind tonight and an answer tomorrow.   

[kellyt]

Peace of mind, for sure.  Stay off the internet and don't try to self diagnose.  You will drive yourself crazy.  Maybe take something for the pain with a little extra to make you sleep (Tylenol PM maybe   ).  Let us know!   Thinking of you, Cariad!!!   

[okarol]

  I hope it turns out to be nothing. Please let us know how you're doing.

I totally freaked myself out because I had a lump where the jaw meets my neck. It seemed to appear overnight, but may have been getting bigger and just finally got to the point where I felt it, because it hurt. Mine turned out to be just as boswife suggested, a swollen lymph gland. I didn't have a cold or anything and that's why I was so alarmed. It has not gone down and the doc said it probably will stay that way. If it got too big or uncomfortable they would remove it. She gave me antibiotics to get rid of any infection that may have cause inflammation/pain. That was almost 2 years ago and it's still here, but I am not aware of it.

[Sax-O-Trix]

Hopefully it is nothing to worry about - I'd go the two hrs. to the Dr. you trust.  I had a swollen lymph node (about the size of one those 25 cent bouncy balls you get from the gumball machines) on my neck about twenty years ago, it hurt like hell and scared me beyond belief.  A round of anti-biotics cleared it up, but it really shook me up pretty good.  Think positive!

[MooseMom]

I'm not surprised you're scared!  I think that if it is sore, it is probably a swollen lymph node (or a nymph lode, as I had just typed), but yes, you really need to consult Northwestern.  PLEASE let us know what you're going to do next, OK?

[RichardMEL]

oh my!!! my best wishes and love (and secret special thoughts) to you dear Cariad!!!! Wow, just not what you need.. I do hope it is nothing. I am definitely of the opinion to get check out ASAP and be safe rather than sorry. Fingers crossed that it will be nothing too serious! wow, scary!

[cariad]

Thanks, everyone!! I am trying homeopathic remedies until I can get in to see my surgeon (hot water and apple cider vinegar, anyone? It tastes almost as good as it sounds!) The surgeon actually emailed me back within the hour, and then when I replied to him, he emailed right back again. He is fitting in an appointment just to see me, which of course rather scared me even more. He made no guess as to what it could be, so my mind jumps directly to he doesn't want to break the news over email. OH MY GOD!!!

Peace of mind, for sure.  Stay off the internet and don't try to self diagnose.  You will drive yourself crazy.  Maybe take something for the pain with a little extra to make you sleep (Tylenol PM maybe   ).  Let us know!   Thinking of you, Cariad!!!   

I laughed at this, Kelly! Yes, I do this to myself every time! I will think of this message and try to stop myself researching any further.

Thanks for cluing me into the swollen lymph node, everyone. Your stories about it being nothing have certainly eased my mind a lot! I really appreciate it. Of course, you look up 'mass on neck' and cancer will be mentioned on every page, so I really needed to hear from people who have had no problems. Gwyn told me it was probably 'just a cyst' to which I replied "That's what the mother said to Debra Winger in Terms of Endearment!" (if you have not seen the film, this might not mean much to you.)

MM, I can live with a swollen lymph node, but a nymph lode would have to go! God knows what havoc those little creatures would wreak in my system.

Richard! What can I say that wouldn't be censored? How about  (belated ) and conventional wisdom tells me that your life has just begun!!! "Secret special thoughts!" You are such a doll!!

I'll report back after seeing the Wonder Boy (my very young surgeon!) Thanks again, all of you. The members of IHD have come through for me again!

[cariad]

OK, It's been a long day and I think it's safe to report that I am hosed in terms of getting work done, but I saw the surgeon and he just wants to watch and see if this goes away. I think it's going down. He mentioned antibiotics, but I made a face at that and he just let it go.

He noticed some red marks on my neck, really don't want to get into it, but they are burns. Then he looked along my collar bone and he saw a mark with peeling skin and he said "Oh, sweetie! You really burnt yourself!" Guess what? You're supposed to put antibiotic cream on burns that peel.

I told him a bit about our holiday  - to an ale festival, and mentioned that I would "not be partaking". He said "Oh, you can drink! Why not?" I was not expecting this reaction and I said "Well, other transplant patients seem to have all of these rules, no caffeine, no alcohol." and he did not really comment on that, but just reiterated that I should feel free to indulge. I don't know if that's helpful for anyone but me.... probably not,m actually.

And finally, I was talking to the tech who was drawing my blood and she asked what kind of transplant and I told her, and then she asked how long ago. I said just this past March, and then mentioned that it was actually my second. She said how long the first lasted, and I told her and she told me that her sister has had her transplant for 30 years and it is still "going strong". Apparently, her other sister matched he 'like a twin'.

[chook]

Glad to read that you are sounding calmer and less worried and that 'the lump' is reducing. How scary. Thinking of you

[RichardMEL]

yeah the rules are confusing post transplant - like you say some seem to be OK to have a bit of alcohol. Others not. Some can get back on the coke bandwagon, others not so much. I wonder if it's just like the renal diet - as in it is very individual depending on your particular circumstances, or maybe it's more a factor of some transplant units/docs being more conservative than others? I mean it's probably safe to say that some will push for a more restrictive regime just to cut down the possible causes of problems rather than it being a rule that, for example, alcohol mixes badly with the meds, or caffeine reduces the effectiveness of something else, or whatever.

It would be interesting to know. it seems to me some folks post transplant can lead a pretty normal life and observer few restrictions, and be fine, and others are mega careful, and still have problems...!!

I do realise that my dreams to kick back watching the cricket drinking beers on a hot summer afternoon are probably too much to hope for, but I can settle with ginger ale or lemonade, as long as I can have lots of it!!!

[MooseMom]

So glad to hear that the doctor didn't faint with horror at the sight of your nymph lode.  That's always a good sign!

[Riki]

yeah the rules are confusing post transplant - like you say some seem to be OK to have a bit of alcohol. Others not. Some can get back on the coke bandwagon, others not so much. I wonder if it's just like the renal diet - as in it is very individual depending on your particular circumstances, or maybe it's more a factor of some transplant units/docs being more conservative than others? I mean it's probably safe to say that some will push for a more restrictive regime just to cut down the possible causes of problems rather than it being a rule that, for example, alcohol mixes badly with the meds, or caffeine reduces the effectiveness of something else, or whatever.

It would be interesting to know. it seems to me some folks post transplant can lead a pretty normal life and observer few restrictions, and be fine, and others are mega careful, and still have problems...!!

I do realise that my dreams to kick back watching the cricket drinking beers on a hot summer afternoon are probably too much to hope for, but I can settle with ginger ale or lemonade, as long as I can have lots of it!!!

yep... post transplant rules are weird, as are renal diets.. *L*  After my first transplant, I was told to continue with the no added salt diet, because I had a high blood pressure, but when I went back on dialysis, I went several months with a very low blood pressure, and was told to take in more sodium. 

[natnnnat]

I missed this whole thread while it was relevant Cariad.  Hope you are happy and comfy today, post Thanksgiving.