I Hate Dialysis Message Board
Introduction => The IHD Family - Our Members => Topic started by: rsudock on January 05, 2012, 10:54:08 AM
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They told Neil he may have lymphoma. :embarassed: Be back when I know more...if this kid dies I am going to lose my sh@@!
Working on transferring to our home hospital. The neph here had never seen or heard of ARPKD....blah!
Xo,
R
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Oh Rachel, I hope the doc is wrong. :cuddle; Please do let us know as soon as you know anything more.
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:grouphug; :grouphug; :grouphug;
Awwww. Will keep you and your brother in my thoughts.
Aleta
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Oh no. *huggles*
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This is not what I wanted to read.... Rachel, the hugs are coming your way. :cuddle; :cuddle; :cuddle;
Neil is not going to die. He has too much to live for. My aunt had an aggressive but highly treatable form of cancer, and I'm nearly certain it was a type of lymphoma. If he does have this, he can beat it. (My aunt did, many years ago.) Neil sounds like a tough young man to me. :boxing;
Thinking of you both. :grouphug; :grouphug; :grouphug;
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:grouphug; :grouphug; :grouphug;
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I am so sorry to hear. Hang in there. :grouphug;
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You two have each other! You both have been through this Kidney Krap, and you will get through this too, "TOGETHER"!
Praying for you both,
lmunchkin
:kickstart;
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You are in my thoughts.
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I am so sorry to hear this. If it is indeed the c-word, I hope it is the most easily treatable kind. If it is not, I hope there is a reasonable explanation as to why they scared you all with this news, so you can all move forward into a healthy 2012. My thoughts are with you.
:grouphug;
KarenInWA
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:grouphug;
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oh dear one,,, i pray for good news for you.. this is frightning,,, im glad to read it's beatable.. sending love :cuddle;
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:grouphug; So sorry, but hope you can get more info soon.
My mom has lymphoma, and they have been able to control it for a long time.
Sending {{{HUGS}}}
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Hugs to you and your family! :grouphug; :grouphug; :grouphug;
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hey thanks friends for your support. they told him the "nodes" in the stomach were to small to biopsy so in 2 months they will do another MRI and see if there is any change....HA like I am going to wait two months right. So Neil and I will make arrangements for the normal docs to do an endoscope. There is a chance it could turn to be nothing, I just hope it is....I know none of us are getting out of here alive, but sometimes I can't connect that to my heart. I get scared...what would I do without my little sidekick? "wonder twins" is what he calls us... :) My heart would just break away into a million little pieces....
The a**hole oncology resident really broke the news with fine decorum. Basically Neil's at dialysis, 2 huge needles in his arm, I'm not there, and in front of all these strangers..."Well you may have lymphoma." And of course he sat there the remaining treatment with that on his shoulders. I mean seriously what a douche bag! Probably talks about people's HIV status on a stage in the hematology wing?!
so my next email will be to the hospital patient care whatever place...this hospital was gross. Had to pay for your own cable, volunteers stalked the supplies in rooms, and all rooms had 2 patients in them. They put someone with pneumonia with Neil and I had to restrain myself not to kill someone...that person got moved....
so this story will be continued when I know more...
Love to you all!
xo,
R
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Continuing to send loving thoughts your way.
:grouphug; :grouphug; :grouphug;
Aleta
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I just asked about Neil in another post of yours today. So they really don't know anything new until the MRI in "2 months"? I agree, don't wait no 2 months.
Keep us posted & sending prayers to you & Neil.
lmunchkin
:kickstart;
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so Neil is back in the hospital since last Thursday. Aaron took him to the ER because he was bleeding from the rectum. They did an endoscopy (tube down the throat) and today they did a colonoscopy. As far as the lymphoma they didn't see any indication of that! :bow; So thankful for that! They did a colonoscopy and found some internal hemrroids (that was what I was thinking)
Because of our kidney disease we get portal hypertension (basically high blood pressure in the liver, so blood backs up and bulges in veins in other places in the body, and results in liver damage) so they think that is what is causing the hemrroids. They did find a polyp and some inflammation in the colon so, they took biopsies. The polyp could be troubling, but since they found it early it should be okay. His liver is still okay and the varcies in his throat (bulging veins in the throat caused again by the portal hypertension) actually look better!!!
So lot's of good, positive results today. Just waiting on the pathology reports and still trying to figure out what is causing the fevers he has been having. A doctor complimented me on my knowledge about ESRD and liver disease! Guess I should have become a doctor!
xo,
R
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Great News! :yahoo; So glad to hear this. Naw, you make a better Nurse, Doctors are too upity! Nurses are more nuturing and caring! :cuddle;
Good news, Rachael. Hope path report comes back promising also!!! :pray;
lmunchkin
:kickstart;
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:2thumbsup;
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Just a little sidebar that I am going to sneak in here....Neil got out of the hospital a week ago this Friday....he is still pretty tired and they are giving him antibiotics at the dialysis unit. He seems to me more emotional lately about things...easily upset, grumpy, super sensitive...I have been treading lightly. My sister tells me I need to tell Neil to be nicer, but I just can't...he not being terrible just demanding at times. I will never say anything b/c now I know how shitty dialysis is and how long he has endured it.........I can be the long suffering one.....
I had to take his discharge papers to the dialysis unit yesterday...he was laying on the bed hooked to the machine....gawd I f***ing hated seeing him like that! I just went to my car and cried about 20 mins...if I could I would give him my kidney a thousand times over and over again.....I know I still see dialysis everyday, but just so much harder with my brother, my bestest friend.......I just want him to have a good chunk of healthy life...just seems lately to me he is so much more tired then usual....
love,
R
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Oh, Rachel.
:grouphug;
It is wonderful that you are there for him. I'm sure he is glad to have you in his life. You can do more for him healthy, so keep yourdelf going strong, too.
:grouphug;
Aleta
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Good for you for letting Neil be an old grumpy guts if he needs to be. The last thing he needs is someone banging on at him about being "nicer". You have a special insight into what it is like to be always unwell and just waiting for the next piece of bad news to come along. What a terrible way to live. This just is not fair.
Rachel, does he receive any kind of counselling? Do you think it might help him? I mean, he has so much to cope with, and since his condition is genetic, is there even any treatment close to a cure? I am assuming there is no cure, per se, and this would be just so hard to live with on a day to day basis.
I'm sorry I don't know his whole story...is he eligible for a kidney transplant? Would a liver transplant ever be necessary/considered? I don't know much about portal hypertension, so pardon my ignorance.
Thank god he has you. I'm sure he is grateful for your non-judgmental presence. :cuddle;
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Thanks Michelle and Aleta :grouphug;
MM no he doesn't get counseling...except for when him and I have our long chats in the car. We probably both need it actually, maybe I ask him to sign up with me somewhere?!
Just like the dominant form of PKD, the recessive has no cure either. You can test for the condition invitro though...
Right now he is on the list, but his PRA is 99. So if he gets a call it will be like winning the jackpot! He needs to get that treatment plasmapheresis to lower his PRA. He says next summer 2013 we are going to make a road trip to the MAYO clinic....
My uncle facebook me about a week ago asking who he needs to contact about donating his kidney to Neil, but I am unsure how steadfast and committed any of my extended family would be about donating....with the PRA lowering it is going to be a journey to match Neil....I don't see any of them being able to commit to donating that long....
Thankfully all he needs is a kidney right now...no liver...yet......but we both are evaluated for liver transplant from year to year....
love,
R
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Oh geez, I am so stupid. I'm sorry Rachel...I was in a hurry when I posted last and wasn't thinking, which isn't an excuse. Of course I know that autosomal recessive form of PKD isn't "curable"...I saw "portal hypertension" and didn't link it with the PKD.
I know that counselling doesn't really solve anything, but you two are living under such stressful conditions that you deserve all the help you can get. It might be worth considering. But there's nothing like the support of a sibling who really understands.
Hmmm....what are you going to say to your uncle, if anything?
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Thanks Michelle and Aleta :grouphug;
MM no he doesn't get counseling...except for when him and I have our long chats in the car. We probably both need it actually, maybe I ask him to sign up with me somewhere?!
Just like the dominant form of PKD, the recessive has no cure either. You can test for the condition invitro though...
Right now he is on the list, but his PRA is 99. So if he gets a call it will be like winning the jackpot! He needs to get that treatment plasmapheresis to lower his PRA. He says next summer 2013 we are going to make a road trip to the MAYO clinic....
My uncle facebook me about a week ago asking who he needs to contact about donating his kidney to Neil, but I am unsure how steadfast and committed any of my extended family would be about donating....with the PRA lowering it is going to be a journey to match Neil....I don't see any of them being able to commit to donating that long....
Thankfully all he needs is a kidney right now...no liver...yet......but we both are evaluated for liver transplant from year to year....
love,
R
Just wanted to give you some hope regarding PRA. Mine was at 99 or 100 everytime it was tested. No one matched and the surgeons said it would be like winning the lottery if one ever did. So, I stayed on the list, but wrapped my brain around "never getting a transplant". I did go through infusion treatments; IVIG and Rituxin for a month to help lower the PRA. The number never went down at all. 5 years later, my co-ordinator called and I was number 5 being called in for a potential donor. Hmmmm! I went throught the motions, knowing it wouldn't match. This donor didn't have 6 different antigens, he only had 3. Highly unusual. But, easier for me to match. Although, there were a couple who could have received the kidney, I was the hardest to match and this was my one shot. So, it was mine. My miracle, my once in a lifetime and I think it was so I could give hope to others with extremely high PRA's. I will be watching and looking for new updates. And keeping you both in my prayers. Hope- it is what we always need to have.
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Yeah, whenever I read a story about someone who feels hopeless because of having a high PRA, I think of you, Paris! Our IHD miracle! :clap;
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THANK YOU Paris for sharing your story...so true there is always a kernel of hope. I needed that wonderful story today...I'll always hold out hope for Neil. :)
Neil has still been in and out of the hospital....last saturday I picked him up from Cleveland his hemoglobin level was down to 5. He hasn't been getting the fevers but he is still having bleeding. THey made him swallow this little pill camera and referred him to see a hematologist for a bone marrow aspiration to see if he is not producing the red blood cells or what not....he doesn't want to do the bone marrow aspiration if he doesn't have to...(he has had one before so he's a bit nervous) so he is going to wait and see if the pill camera shows anything....
Thanks for all the kind words!!
xo,
R
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Oh man, you two kiddos have really been through the wars... :grouphug;
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:grouphug; from me as well.