Woke up crying

[SweetyPie]

Hello everyone I do not mean to sound like a baby but Throughout the night my neck was hurting I was unable to sleep. I came down crying because I have never experienced pain like this. My neck and chest are hurting, I can not breathe in as it hurts too much even swallowing. My jaw and ears hurt also I have no idea what could be the issue. I have dialysis tomorrow should I wait until then? I feel absolutely awful.

[UkrainianTracksuit]

If you're still feeling awful, I would suggested getting it checked prior to dialysis. When I've had the collective symptoms of neck pain/can't breathe/pain, it's turned out to be virus or bacterial infection. Not saying that is the case with you as I don't know but it's worth getting checked out sooner rather than later.

[SweetyPie]

I feel what you’re saying and I agree with you. I am not feeling better at all. My temp was 94? Will check again later. I have a feeling it might be viral. I had a Ramadan party on Sunday. Met with a lot of people not sure if that could contribute to it

[SweetyPie]

I think I have an answer. My catheter where it’s under my skin is red. I’m having a panic attack because I have no idea where else they will put another catheter because my right side developed an infection last year and they moved to my left side. I will not accept going near the groin I have had that few years back and do not plan on going there again. I have no idea what I’m going to do

[SweetyPie]

Update
I decided to to go the er my breathing was not right and the pain was unbearable. The cath under my skin turned red later in the day. My temp was 102.9 but I was shivering. I told the er all my symptoms and they immediately took me back and started me on antibiotics. They have me one last treatment this morning and afterward took out my cath. They want to clear the infection first then on Tuesday put a new one in.

[iolaire]

I hope you start to feel better.

This type of infection risk should be lower with a fistula.  So if that is an option for your veins it’s something to consider once you are stable.

[GA_DAWG]

hope you are feeling better and the antibiotics gat rid of the infection. Iolaire is so right about the risk of infection being lower with a fistula or graft. I know you were worried about how it would look with you being so small, but it is much safer than dealing with infections from a catheter.

[SweetyPie]

You guys are right about a fistula. We have to think of a solution for my blood pressure before the fistula. My fever is done but my pain is very much still here. My neck and chest hurt a lot. I didn’t think an infection would cause this much pain. I hope u guys are praying for me

[Simon Dog]

There are multiple approaches to a leg cath.  There is the line in the groin inserted for urgent dialysis not suitable for long term use.  I saw one patient at D who had what looked like the chest cath port sticking out of her thigh. Be sure you team explains all options to you.

Stick a needle in my eye, jab a dagger in my thigh, eat a horse manure pie - B. Simpson

[SweetyPie]

Hi all,

Sorry I have been gone I have been trying to recover. I came back from the hospital last Friday. I had just gotten a new Cath that day and the doctor wanted to send me home sooner than later because there was nasty virus going around. Before leaving the hospital I change my shirt and see my dressing filled with blood so they changed it and it was very painful as the stitches and everything were fresh. I had dialysis the next day and I believe it didn't occur to the doctor but he should've stopped my blood thinner... my site bled during dialysis so we get that cleaned up. Then throughout the day I had to keep changing my dressing because it keep bleeding...so that wasn't fun.
Throughout the week Ive been doing just okay it seems like its taking a long time to recover. Even though I am removing all my fluid there is still fluid in my lungs I feel short of breath a lot of the time and the nurses even commented that they can hear diminished breath sounds.
Today I woke up with the worst body ache and I just don't feel my best at all. My temp was 99... I am not too concerned but I just don't feel well. Tips and helping my body aches would be nice. Im guessing this is part of the recovery process. Also Anyone know why fluid remains in my lungs? Anyway to help this?

[cassandra]

Hi Aaisha, sorry to read about your situation. For body aches I just take 2 Tylenols 4 times a day (I'm smallish). And I would start looking for and talking to good vasc surgeons about a fistula.


Wishing you strength, luck and wisdom, love, Cas

[SweetyPie]

They lowered my dry weight, I feel somewhat better. I am not short of breath. My nurse told me today she doesn’t not hear fluid just diminished breath sounds as I explained earlier and said this could be due to the infection I had. I guess time will help me heal.

[Michael Murphy]

Listen I feel awful for the problems you are having the part I hate is I am 68 and started D 6 years ago so my youth was spent having a great time, I had a job I loved UNIX ADMIN, plus os device development.  Got married to a wonderful women at 42 and was content with my life.  I wish the young did not have to suffer with this disease know every night I will pray that it gets better for you.  Keep up the good fight.

[lulu836]

the part I hate is I am 68 and started D 6 years ago so my youth was spent having a great time, I had a job I loved
 

Me too!  I didn't start dialysis until I was 76........now 80.  Have had all the best most of my life so now I pay the piper every Tu, Th and Sa.  Not a very big price though.....

[SweetyPie]

Listen I feel awful for the problems you are having the part I hate is I am 68 and started D 6 years ago so my youth was spent having a great time, I had a job I loved UNIX ADMIN, plus os device development.  Got married to a wonderful women at 42 and was content with my life.  I wish the young did not have to suffer with this disease know every night I will pray that it gets better for you.  Keep up the good fight.

I appreciate your kind words. A lot of people have pain in their eyes when they hear I have been dealing with this since I was 4. I’m not going to lie it gets tough extremely tough. God gave me this disease because he knew I would be able to handle and cope better. If you ask anyone they will tell you I am always a happy and positive girl I thank God for giving me a personality like that. But lately after my infection I worry about what my future holds so I am just asking for positive prayers from you all. A good family support system has gotten me through a lot and I know will still help me through these times. So happy my shortness of breath has decreased.

[UkrainianTracksuit]

Aaisha, I wish I could give you a big hug.

It is definitely not easy dealing with kidney problems for pretty much all of your life. Thank goodness you have a wonderful support system! It's true; it does come across that you are a kind and positive girl. To remain that way in the face of such major challenges is really something.  You didn't turn out like me: bitter and miserable.  I was bullied a lot for my health issues so I am glad you don't endure that.

When feeling ill and the medical team "is lost for words", it is a very disconcerting feeling and I understand those feelings over what the future holds. More than once have I endured such thoughts and it is daunting. I was doing really bad prior to transplant (couldn't get an access working, full of fluid though I watched like a hawk, felt awful) that I figured, well, it's been a good run! May you continue to have the strength, provided by family and belief in God, to keep fighting the good fight. Please take good care and know that I am praying for you.

[PrimeTimer]

Glad you are feeling better! Please take extra care whenever you are short of breath. Depending upon the cause, shortness of breath could put unnecessary pressure on the vessels inside your heart. Better to let a doctor check things out and do a scan than to let it go thinking you will get better on your own. I am learning these lessons myself.

[SweetyPie]

Aaisha, I wish I could give you a big hug.

It is definitely not easy dealing with kidney problems for pretty much all of your life. Thank goodness you have a wonderful support system! It's true; it does come across that you are a kind and positive girl. To remain that way in the face of such major challenges is really something.  You didn't turn out like me: bitter and miserable.  I was bullied a lot for my health issues so I am glad you don't endure that.

When feeling ill and the medical team "is lost for words", it is a very disconcerting feeling and I understand those feelings over what the future holds. More than once have I endured such thoughts and it is daunting. I was doing really bad prior to transplant (couldn't get an access working, full of fluid though I watched like a hawk, felt awful) that I figured, well, it's been a good run! May you continue to have the strength, provided by family and belief in God, to keep fighting the good fight. Please take good care and know that I am praying for you.

Your words are very touching, thank you and everyone for being so helpful and lighting up my day. I am happy I am feeling a lot better. I know I need to be on top of my health and tell my doctor if I have any problems. My dad always tells me this all the time. I appreciate prayers they mean the world to me.