Hey everyone. I’ve been reading some of these posts and feel it’s time to share my story. I am 28 and over the past year my gfr has gone from 30 to 16. I am just starting the process with the hospital to get a transplant. I have IGAN and feel really alone. My nephrologist doesn’t have the best bed side manors but am hoping he knows what he’s talking about. I am taking medications but feel I should do more with my diet. However he has only ever told me to cut back on sodium and processed foods, I have asked multiple times to get referred to a renal dietician and he says I don’t need it. I reached out to a dietician but she didn’t specialize in renal.....that is just one thing that is bothering me. I just also feel like I have no idea what this process is going to be like. I have a list of appointments but no real information on what they are about. The appointments are just with nurses and technicians so they can’t really answer my questions. I have no idea how long this process takes. How long does it take to get approved? My boyfriend is wanting to be a donor but we only know he is a blood match at the moment. How long will his process take? Should I be asking other people in the meantime to be a donor before we know if he is a match or not? Am I just over reacting? I’m overwhelmed with working full time and going to these doctors appointments. It’s just begun and I’m not sure how to handle it already.
Overwhelmed : Hey everyone. I’ve been... - Kidney Transplant
Overwhelmed
I would start by going to kidney.org/patients and doing as much research as you can and reaching out to their care line by telephone. If your nephrologist does not take the time to answer your questions, get a new one. This is no time to be timid or confused. As a transplant recipient, I know you have to advocate for yourself. That means stepping out of your comfort zone sometimes and demanding answers. If you know where your transplant center is, call them. (Have you actually been listed?) They should have educational programs and information. Research everything you can on the internet. Nephrologists seem to offer little about nutrition. Google "renal dieticians" in your area. Personally, I didn't get much information from mine that I couldn't have found on the internet. Google renal diets, etc. For each tech or nurse they're scheduling you to see, ask "why am I seeing this person?" I wish you luck, and continue asking questions on forums like these. It's a great start!
Ditto to ChattyCats comments. You must absolutely be your own advocate and do your own research. There will be many times that you feel totally alone and as if you are not getting the time and attention that you need. Do not give up!
When the time comes there should be a full day spent going through many tests and meetings with various personnel at your transplant center. Mine required a psychological visit, financial aid visit, social worker and the list went on. There was also a session where they explained the full transplant process and I got an educational binder as well explaining meds, food/diet etc.
As for finding a donor, I created a FB page, twitter account and a website to search for a donor. It worked. Best of luck to you. Remember, you must advocate for yourself.
Hi, PurplePill--My nephrology clinic had a resident renal dietician that patients saw as a matter of course. I think it's a good idea (thought I certainly didn't follow her advice when it seemed counterintuitive, like eating white bread--in that case, I just cut out bread). In fact, I personally really like the clinic setup because there are lots of renal specialists in one place and they all work together for/with you. As for getting approved for transplant, the timeline depends. If you have a live doner, get that person started in the evaluation process right away. It can take quite a while, and there are no guarantees they'll get approved, even in they're a match. It's a complicated process that is very much focused on making sure the donor is both physically and mentally fit. (Ultimately, it's the hospital's decision, not the donors.) Even if you don't ask others, it's a good idea to start talking about it with people. I won't pretend it wasn't a difficult few years, going on dialysis, then the pre-transplant process, then the transplant (last year), then adjusting to your new life with your new organ, etc. But there are a lot of us who have done it, so take courage from that, and use these online communities when needed--that can really help when you feel isolated or unsure.
The above advice is solid! Also, if you have DaVita Dialysis Centers in your community, consider signing up for their FREE 2-hour seminar, "Kidney Smart." It will be led by an experienced renal nurse, and you'll go home with an armload of nutritional (and related) information.
Please get a 2nd opinion.
Your insurance should pay for 2nd opinions.
Look on line for foods to stay away from with kidney issues.
BUT THAT IS ONLY IF YOUR BLOOD WORK SHOWS THAT YOU HAVE TOO HIGH OF NUMBERS IN CERTAIN CATEGORIES.
For example: potassium, phosphorus, sodium, etc...
If you don't have a copy of your most recent blood work get one. And each time you get it bloodwork done, always ask for a copy from the Dr. Know what your body is doing.
Blood work print outs are easy to read.
They will tell you your current levels & then in most cases in "parenthesis" it will show the normal ranges.
If any of your numbers are not within those ranges ask the 2nd opinion Dr to be referred to a dietitian.
It's your body, your life, stand up & fight for it.
If you live in the central Pennsylvania area I would be happy to refer you to my nephrologist. He is awesome, proactive & doesn't sugar coat anything.
That's the best type of nephrologist.
I hope this helps 😊
Everyone is right! You do have to be your own advocate. Remember this is your health and your LIFE!!
You do need to make an appointment with a renal dietician. If your nephrologist does not feel it is important, maybe you need to look for a new doctor. Or, maybe the nurse in his office can make a suggestion and help find a dietician. I don't know if you have been following this site for awhile, but there are a lot of people who have been following a renal diet, through the help of a renal dietician, they have stabilized their CKD. Some have even raised their GFR a couple of points.
- As far as the process of getting put on the UNOS transplant list, the appointments are to make sure you are in good health to accept a transplant and everything that goes with it.
They will do more urine and blood tests. They may even do a 24 hour test. The doctors will want to make sure your heart can take the stress of a transplant too. They also not only find out your blood type but will test for your tissue markers (antigens). They try to match as many as possible when looking for a kidney for you. There are 6 that they try to match. My donor matched 4 of my 6 antigens.
- You will probably see a psychiatrist. Doctors will want to make sure you are in the right frame of mind to go through the process. It's an adjustment afterwards also with the medication you will have to take for the rest of your life. They want to make sure that you will protect your new kidney and take your medication as prescribed.
- You will also see a financial counselor. If your insurance requires a referral or prior authorization they can help with all of that. They can also give you an idea of how much a transplant costs and what your co-pay may be.
- Usually, you won't know that you are accepted and put on the list until they get all of the results of your tests. It may take a week or two until you know.
- You will also be assigned a coordinator. It is someone that you can contact if you have questions or problems
- As far as your boyfriend being your donor? They will have to do a lot of the same testing as they will do with you. They will want to make sure that he will be healthy living with one kidney. My cousin was a 2 out of 6 match and was going to be my donor. He had to wear a heart monitor for 24 hours and the doctors discovered he had high blood pressure. He was ruled out because of the high BP. It was good that they discovered this for him so he could be put on meds, but bad for me since he couldn't be my donor.
- My brother was going to be a donor too. A sibling is one way that you can have a perfect match for a kidney. You get 3 antigens from your mother and 3 from your Dad....so if you received the same 6 as your brother or sister - it would be a perfect match!! Unfortunately for me, my brother also has high BP so was automatically ruled out.
- YES you should also be looking for others that may be willing to be your donor. You are not over reacting. It all takes time.
If you have specific questions, please feel free to ask me. I am living well, 19 years+ post transplant.
Thank you for your response. I have a really high parathyroid hormone level. February was the last time I saw my specialist and my PTH was at 11.9 and he didn't seem worried about it but now in May it is 20.2 and the range is 1.6-6.9. I've read that this is commonly elevated with CKD but is it something I should worry about. With this looming over me as well as the possibility of having glaucoma I'm not sure what to worry about anymore so I worry about everything. I see my specialist next week and hope he says something about this. My biggest fear is he will shrug it off like he did in February.
Always be pro-active by doing your own research. I myself had to be one step ahead of the doctors to have a better understanding. Many a times the doctors don’t tell you a lot.
You need to stand up for yourself and get the doctor to explain WHY your parathyroid is SO high? Don't wait for him to say something.....start writing down questions to ask him now! If he doesn't answer your questions to your satisfaction, then it's time to change doctors. I will be thinking of you! Keep us posted!
When my PTH was high while on dialysis years ago, the nephrologist told me it was common in people with kidney disease. I had to watch the calcium intake. I have my transplant 25 years and at the beginning I went to see an endocrinologist who specialized in kidney bone disease. Over the years I took various meds for osteoporosis. My calcium kept climbing and my PTH was high. I took Prolia and wound up with 10 basal skin cancers and had 3 parathyroid glands removed last June. I first took a parathyroid scan. Now my calcium is normal and my PTH is normal also.
I think you need guidance about diet for your other issues and for the PTH issue as well. Good luck.
You hang in there! My process took awhile to find donors. Many wanted to be tested but did not pass the initial steps. My daughter will be my donor and my transplant is scheduled On July 19th. I just had another setback and so my transplant may have to be postponed.
If you are not comfortable with the care that your doctor is giving you I would seek another nephrologist. I have a great support team: although I’m in dialysis I have a great Renal Dietitian and Pharmacist. Yes there is a diet that we should adhere too to preserve whatever we gave left in our kidneys. Will you have to go on dialysis while you are waiting? I’ve been on dialysis for almost 2 years?
Talk to your transplant coordinator for some guidance.
I hope everything works out for you.
They are hoping I don’t have to go on dialysis and they will just book me for a transplant but I’m trying to prepare myself mental in case I do.
Hi,I can’t believe your nephrologist didn’t tell you to stop eating meat and dairy. Watch your phosphorus, sodium, protein and potassium. In Arizona my dietician is with a Uhling consulting. My diet was based on my labs every time I took them. She is Great! Diet is super important and continue to drink lots of water! No alcohol, beer or wine! . My wait was just under two years? I did accept a kidney with Hep C because now with new medication Hep C can be cured. I am on a 12 week program and have two more weeks to go. As of now no HepC detection from my labs. The minute I signed up for a Hep C kidney I got called within two weeks. My nephrologist sent to kidney education classes. I read a ton of books and got tested by the transplant team. X-ray of chest, colonoscopy, mammogram, Pap test, clearance from my dentist, ekg, stress test. Your emotions will be up and down but stay positive. I was surprised I was not in any pain after the surgery. Anyhow just research and ask questions. I am 4 months after transplant and have my ups and downs but I am staying positive! You will too!
Thank you everyone for your responses. I do my best to look at my monthly bloodwork and determine my own diet from there. I have a few cool books and have googled to no end, I just find they always say to consult your dietitian. I will look harder for a renal dietician.
I admit I am very impatient and this process is putting me into a depressed state and I’m stressing over everything.
I have a really high parathyroid hormone level. It is 20.2 and the range is 1.6-6.9. I’m wondering if this is common?
I’ve also been told by my optometrist that I have signs of glaucoma and he is sending me to a specialist in August. It just seems like one thing after another.
It’s just a big waiting game!
Hi,
Regarding your PTH have you checked your vitamin d level? Sometimes a low vitamin d level can elevate PTH. We had the same experience with our nephrologist and had to ask for vitamin d to be tested and taking a supplement did help.
It’s easy for me to say: “Try not to worry”. I did worry a lot because I would have to be away from my home and family in Hawaii to have my transplant at UCSF. Eventually everything came into place and I’m looking forward to July.
Hello! I also had to initiate the conversation with my nephrologist about diet. His recommendations are keep sodium under 2,000 mg and protein around 0.8g/kilo. My understanding is that major dietary restrictions aren't necessary until you are on dialysis. In our area the nutrition classes are offered through the the dialysis centers, and you can self refer and attend before you require dialysis.
In terms of transplant evaluation, one way you can speed up the process is have all of your testing done before you meet with the program. I would work with your team to get your CT scan, cardiac function testing, and cancer screenings done ahead of time. That way the transplant program just needs to order the blood work the day you meet with the transplant coordinator, nephrologist, financial counselor, and social worker. I went in with all these tests completed within the last 12 months and was listed within 10 days. That is the gate. Once you are listed you can start having living donors tested. It will also help you feel like you are in controls of things. I was referred in October 2018, evaluated January 2019, listed February 2019, and it looks like I will be having surgery next month. If you advocate for yourself and push your doctors, it can happen!
Lastly, I also have high PTH. Your kidneys regulate this hormone, so it is very common for it to be elevated when you have CKD. Have you asked your nephologist about starting calcitriol? This will help with vitamin D absorption in your bones and lower your PTH.
Best of luck!
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