After being sick for about a month and a half, I landed myself in the hospital due to straining muscles in my neck from coughing/dry heaving so much (it's much better now) and had the pleasure of listening to multiple voicemails from my nephrologist the following day. I was told that my kidney dropped to 12% and my "sinus infection" was actually symptoms of kidney failure and that I needed to start dialysis as soon as possible. That same day I was accepted as a transplant candidate but was also given a small list of things to do so that way I can get listed.
Fast forward roughly a week and a half and I am now moved back home from school and am slated for my catheter placement for the 30th (was originally the 6th of December but it got moved up).
I have literally went from a perfectly independent person who could live with a million reminders on her phone to barely being able to get up stairs or to the bathroom by myself in a matter of weeks. I barely eat since everything makes me nauseous and my muscles will randomly start shaking from fatigue and I sleep my days away.
Needless to say, I am terrified. I know that dialysis will make me feel at least somewhat better, but I have to get there first. I'm grateful that I have a great support system and they have helped tremendously.
Every day I have to tell myself that I will get there and that everything will work out. I count my small victories (woo hoo I got out of bed by myself!) and have grown to respect my limitations, but it's still hard to wonder if it will ever get better. As of now my main enemy is trying to eat enough since I'm just not hungry, the fatigue/muscle weakness and always having the taste of metal in my mouth. Also just mental/emotional stability with trying to knock out stuff so I can get listed and get my catheter placed.
Thank you for reading my rant/update! Any support is appreciated!
Written by
Ladybug_05
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It is very normal to feel scared as this is a big shock and a journey into the unknown. Breathe and lean on your support system as they love you and will be there for you! As will all of us on this site.
Of course it is awful to feel as you have lost your independence and frustrating
to feel short of breath and no appetite.
Let your doctor know about these symptoms and see what he or she can do to improve your quality of life, that's what they are being paid for!
Continue to tell yourself that it has to get better...
My biggest frustration is that I knew that this day was coming for a long time. I was born with Kidney Disease so I wasn't surprised that I would need dialysis/transplant and I knew that eventually I would start to feel worse but the fact that it's escalated in a matter of days to weeks is making it harder to adjust. My team's been checking up on me and I've been put on three (or four?) Medications to make me comfortable for the time being. My only hope at the moment is to get started on dialysis...pre op is tomorrow! Thank you for the support!
Believe me you *will* feel better once the toxins are being removed through dialysis. Have you ever gone to kidneyschool.org or homedialysiscentral.org or kidney.org ? They are all great educational sites. You also may want to consider changing to home dialysis which gives you more freedom with your diet and fluid. I started out in-center for 7 months and then went to home hemo. It changed my life. I went to being unable to walk 25' without help to getting work as a cashier. I felt almost normal.
Also you said "That same day I was accepted as a transplant candidate but was also given a small list of things to do so that way I can get listed." Please understand that being referred for a transplant and actually being "listed" are completely different things. You will need to give a complete medical history (family too), testing like x-rays, heart stress test, mammogram, PAP, and lots of bloodwork done. You will need to meet with the transplant team typically nephrologist, transplant surgeon, social worker, financial coordinator, dietitian etc. then they will compile your records and present it to the committee whom will decide if you are a good prospective recipient and either list you or not. There are many centers and you may list at one or many.
At this point, eat whatever appeals to you. When my appetite stinks I always have a protein bar on hand. Dialysis will remove protein and it is vital to your well-being. The metallic taste will go away, as will the fatigue once you're getting the dialysis treatments you need. In-center hemodialysis offers only the bare minimum so you may want to consider home therapy which will allow better clearances. Don't forget that a catheter is the least preferred access and you'll need a fistula or graft. If you're unsure about what they are go to kidneyschool.org for a simple yet thorough explanation.
If not yet already, consider social media support. On Facebook there are over a hundred dialysis support groups. From PD to home hemo and more. You're sure to find a great group that is unique for you. I have several groups I own or moderate. You can ask questions (none are stupid) to just venting.
Come back if you have other questions. You are not alone. PM me privately if you want. Blessings
I've actually already done all of the testing necessary (thankfully )! I've gone to all of the educational classes, done the testing and have met everyone. I also have already been presented to the board, which is why I was accepted as a candidate but wasn't listed yet. I have a couple of things that they needed, like paperwork and a few tests to see if I need any boosters but otherwise my coordinator said that I should be listed by the end of December (if not sooner).
The initial plan was to keep my kidney stable until I found a living donor (I have a few who are being tested soon) but I got sick and now need dialysis. I had already gone through the process of being a PD candidate so I can do Perotineal dialysis at home. My catheter placement is Thursday and i start training sometime after the site has healed.
I apologize that my post wasn't the most detailed; my memory isn't great so I left some stuff out. I have been doing the back work for both transplant and dialysis since my kidney hit 15% in June so that we would be prepared, but I wasn't expecting on getting as sick as quickly as I did so the whole dialysis start is a little rushed.
I'll make sure to look into the educational sites and social media pages and see what comes up. Thank you for your advice!
I really am interested in your reply above and would like to copy it to my phone but cant figure out how to do it ? Do you know how ? If so ... would you tell me please.
[09.03, 18:20] Павлик: Здрастуйте, мене звуть Павло, я з України, мені 40 років, група крові 4+, я збираюся отримати результати аналізу крові і HLA-типірування. Я готовий читати як донора нирки і прошу вас допомогти мені знайти одержувача. Буду дуже вдячний Вам
[09.03, 18:22] Павлик: HLA A (203) A (210) B (37) B (64) DR (12) DR (7) DR (51) DR (10)
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Finally dialysis..
The Kidney Project
The time has come....
GFR of 5 To start dialysis or not
