Hello Piglets
I am so sorry to hear of all the troubles you have been having with yr catheter & renal team. At least you have a great rapport with yr Dr & the sooner he returns the better it will be for you. Unfortunately, his staff appear to have a huge attitude problem & you will need to bring this up with Dr when you see him next. I’m so sorry he doesn’t have a Dr you can “fallback” on while he’s gone. I’m sure you will speak to him about this too!
3 children under 3yrs. God almighty, what a woman you are! I am confident with what I’ve read about yr history that you will come through all these setbacks. I pray for you that it will be soon. With yr health being so low it must be so very hard for you to cope, but as I said, what a Woman you are! I pray yr Mum will recuperate quickly so she can take over her “sitting” role & you will need to lean on other family & friends for their assistance in yr time of need. Because of yr current health crisis you will need to put yourself before others until you get this sorted!
My prayers & thoughts are with you.
Cheers, Aussie Angie.
I just can not believe this has been going on since the middlef February.
Hubby had his catheter placed the first of December. He was not allowed to leave the operating room until it was check to see if it worked correcty. We went to the doctors office each week to have the dressing cleaned and checked to see it it was still working. We started training for PD the first of Jaunary. Tough but we made it trough. We neither would want to consider anyother type of dialysis.
Piglet I just can’t understand what is going on with you. I have been trying to figure out who is missing the mark in you situation.
Ok I posted on new post but here is quick update…Catscan came back and says there is no reason it is not working…Not kinked and it is where is should be…Now problem is he says it shows several enlarged lymph nodes and a ‘mass’ in my lung…It could be my sarcoma returned and if in lung it is aggressive…Best case scenerio is my body is reacting to the pd catheter that is why enlarged nodes and mass in lung is actually fluid in lung.He wants me to go to gen surgeon and have biopsy of nodes…ARGHHH I asked him can’t we just get test to see if indeed mass in lung is mass or fluid becaues that would determine course of action he stated no because while surg is in there he can play with catheter and see what is going on…I am not comfortable with this …I feel just helpless right now I called oncologist she is out until tomorrow. I tried to make appt with another here in town and earliest I can get is next week…I think I should have test to see if fluid from catheter not working or mass because first off that would just get me ready for what I have to now deal with …
Piglets, you don’t know until you know. It’s certainly reasonable to think that with a GFR of less than 9 and no dialysis, you might have fluid buildup in your lungs–that DOES happen. Each year, some of the folks who start dialysis on an emergency basis go to an ER thinking that they have pneumonia, when it’s really just excess fluid in their lungs.
Lymph nodes can be enlarged for lots of different reasons, and are a common problem. Here is an article about it from the Mayo Clinic: http://www.mayoclinic.com/health/swollen-lymph-nodes/DS00880. Since the swollen glands are in your groin–close to your catheter–it could well be that your body is reacting to the foreign plastic.
If the oncologist is there tomorrow, I hope you can arrange to see her then. That way, you can get a second opinion from someone you trust about whether a biopsy is needed to see what’s going on (why “play around with” a catheter that is supposedly okay?) or if there is a less invasive way to find out.
You really need to get in the other line when troubles are being handed out–you clearly have more than your share! Hang in there. At some point, you have GOT to catch a break, don’t you think? It’s certainly your turn! Meanwhile, you are strong, strong, strong, or you wouldn’t have made it this far. It’s got to be tempting to just throw up your hands and quit, but don’t. Three little piglets need you! 