I'm feeling rather anxious at the moment.i went up to hospital to have some extensive blood tests in preparation to discuss transplant.i feel very scared and just wondering how to deal with this all.how long does it take for the doctor to gather information?I know they have taken blood group test and tissue matching etc..has anyone been through the process and what was their follow-up appointment like?iv had the kidney scan and echocardiogram.do they do any other tests apart from those..?it's really getting to me now and I feel scared..i think the anxiety stems from what they will find..hope to hear from someone.many thanks..
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Peri5
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It's hard for me to say try not to get anxious as it is a hard process and I feel for you, but you don't need to do this alone we are all here to support you. I got listed 4 weeks ago and it took 9months to get on the list.
So you need bloods twice, 4 weeks apart from each other, ECG, chest x-ray, kidney scan, heart scan, myocardial perfusion test, you need to have seen a dentist and had dental xrays in the last 6 months. You will be given a transplant nurse, you will see the transplant surgeon to go through the surgery, you may need to see an anthestic doctor. You have to be seen to be in good health with no other major health risks and your bmi has to be good too as dont list people that are over weight. (I don't know what they class as over weight). You usually only get listed if your renal function is a certain level and 6 months or less away from dialsyis. After all this happens you go in front of a board of doctors to discuss your case (not yu personally just your file).
Sorry writing all this probably doesn't help with the anxiety but I think it only fair to tell you what is involved.
Have you not been given a transplant nurse that has explained all this to You? I'm under Oxford so some of these might be different for the unit you are under but generally chatting to others these are all required.
Take care and someone on here is always there to help.
Hi, I know how you are feeling. It was scary to me too and confusing. I had to go downtown Houston 3 different times. Once I got labwork, Chest X-ray, ultrasound. Another day I had lab, heart tests, mammogram. Another day I had lab, saw urologist and he did some kind of test. None of it was too bad except the mammogram and one of the heart tests was kind of embarrassing.
Do you have someone going with you? That helps to calm your fears. Just take it one thing at a time. Once they had all the results they got together with the team and I was approved to go on the waiting list. If you have any questions, feel free to ask. I’m glad to share what I can. Prayers for you. God can do anything. You are not alone😀😀😀
I don’t remember where you live , Peri5. So my stuff may differ from Charlene as I’m in the United States. Here it just depends on your insurance company regarding the dental stuff so I didn’t have to deal with that.
You have to have good insurance. Be able to prove it will all be paid for! Have been getting things together two yrs. now. At least in us this is a big deal. Money sometimes comes first not really caring about the patient. A very fustrating issue. Programs out there but you must qualify for them. Do not know the percentage is for denial, just be prepared for it. Was denied first time. Good luck!
My name is Dave I was on dialyses for 7 years sounds like to me your at the beginning of testing, each test you have the results will determine if other tests test are required, I was also anxious and overwhelmed with all the testing took me 4 years to get on the list, although I did have Hep C and that alone took 2 years to cure that’s another story,ask your nurse about your results and any future tests, my best advice would be talk to your doctor about anxiety meds stick in there never give up no matter how hard it gets I was at the point of giving up but something kept me going🙏🙏🙏 had transplant 5 months ago feeling great my life changed over night😃
This is a good thing, not something to be apprehensive about!! You do want to be on the transplant list, right? These are all tests that are necessary so that you would get a good match for your new kidney. With a kidney they don't just look at blood type, but there are 6 tissue "markers" they also try to match for a transplant. The doctors also look to see if you have had any virus's, specifically CMV. In my case, my deceased donor had CMV when he was younger, and I never had it. CMV is a virus that actually causes some to lose their kidney. The doctor's want to make sure you are as healthy as you can be. These tests are all necessary so that you have the best chance possible for a successful transplant. They will try to match your new kidney to you and what they have found out with all of these blood tests.
My deceased donor was 16. My new kidney matched 4/6 tissue markers. Since he had CMV and I didn't, I was on viral antibiotics for several months after my transplant. I am now 19 years post transplant. Because the doctors did all of those tests on me before.....I have never had a rejection episode and my new kidney is working well with a creatinine of 0.9, even after all this time.
Good luck to you and hopefully soon you will have your GIFT of LIFE!
I know the testing process can be overwhelming, but, at age 68, I looked at it as a way to get a thorough checkup for any hidden issues. I started my evaluation and testing Oct 2017, finished and luckily got on the list the end of Jan 2018. MCV (VCU Health) made sure my insurance would cover the surgery and meds on the first day. My kidney coordinator was in constant contact to make sure I did my monthly bloodwork. I never forgot, but it was good to know they were checking. At that point it's just a matter of waiting for the call with your bag packed. My fistula had failed and was ready to get the graft when I got the first call at 11pm in March. I was 10 mins from going down to surgery when the kidney failed. My husband and I stayed positive and called it our trial run. Sure enough, the next month I got another call and the surgery went well and was home in 3 days. I recognize that my case is an exception, and I was fully prepared to wait years for my transplant. But, sometimes God has other plans for you. Stay positive, eat healthy, and try to lower your stress. You're in my prayers.
Many thanks to everyone for replying to my post.appreciate all your advice.having your support is a massive help to me.i shall be replying individually to you all..Peri x
Hi there! I'm in the same boat as you!! I'm going through the evaluation process and they generally scan for any type of cancer because of the immunosuppressive meds post transplant. So stress tests, ultrasound of kidneys, chest x-ray, gyno if you are a woman, colonoscopy if you're over 50, and psycho/social interview. It's overwhelming and frightening but, you're not alone, anything I forget someone else may help fill in the blanks. Good luck to you and your quest!!!
Totally understand what you are feeling. I had my work-up last September. The facility I am working within St. Louis has you come in for a full day to get all of the work-up done at once rather than letting it drag on for months.
The day started at 8:00 with an orientation to options available for dialysis. Then met with a social worker and insurance. Had a chest x-ray, CT scan, extensive blood work (I have a history of blood clots), dental X-rays, a maximal heart rate stress test, a meeting with a transplant nephrologist. Day ended at 5 pm. Also got Help C vaccine and pneumonia shot at the same time.
Because of my history of blood clots, I had to do follow up with a dermatologist in my hometown 2-1/2 hours away. Within a month, I was on the transplant list because the transplant committee reviews cases every week.
While all of this can be scary, I find the information I get from each test or throughout the process to be empowering. It helps the Dr and me know what we need to do next. It could be as simple as monitoring my blood pressure more regularly. It also gives me time to come to terms with what I am going through. That said, every major change, such as coming to terms with the fact that I will likely need to start dialysis soon, something that was not even on the radar 6 months ago.
Make sure you have a good support system in place, and ask your doctor a lot of questions so you understand what is going on. I'm an engineer by training, so all of this is incredibly interesting to me, and I can use my training to decipher the whys behind the changes.
Which center in St. Louis? Since I have Aetna they only are in network at certain locations and there's one in St. Louis, MO on the list but it's over 4 hours drive so not my first choice. KU Med is the closest and it's still 3 hours away.
Well, I have to complete all the tests before I get on the transplant wait list. So far, I have passed most. But the Echo showed fluid around my heart mild to moderate, so I worry. And I got sick from the Gavilyte laxative I had to take for the colonoscopy. I will be doing a stool kit instead for now. These tests are very difficult to get through emotionally. By the time you get to Stage 4, it seems lots can go wrong in these tests. I try to stay positive.
Hi Peri. I was assigned a transplant coordinator who directed me on what I needed to do and met with me to review bloodwork and other data collection. The types of tests you must take depends, in part, on your age and sex. For example, over age 50 requires a stress test. You will also likely need to meet with a surgeon, and possibly a psychologist. It is natural to feel some anxiety. Here is my list: 1) Review transplant binder (explains everything about a transplant, including drugs, etc.). 2) Cardiac evaluation. 3)Chest X-ray. 4) EKG. 5) Abdominal ultrasound. 6) Bloodwork. 7) Urine cultures. 8) Stool for occult blood. 9) TB test. 10) Pap smear/mammogram (women) or PSA (men) for over 50. 12) Oral Glucose test. 13) Dental exam. 14) Psychology interview. Everything gets reviewed by a transplant committee. If they have health concerns of any kind, they require a follow-up before they make their final decision. Your blood type (A, B, O) and antigen profile are key data that determines how quickly you get a kidney once entered into the matching program.
Thank you so much for listing all the required tests and outlining the process..I'm currently on the waiting list, had a surgical assessment review which is done yearly..I have started CAPD since July 21 so its a question of keeping well and waiting for that call.
Hi Peri! I noticed AFTER I sent the post that your post was from 3 YEARS AGO! So sorry! But, I am glad you are on the list and on CAPD. So am I. Best of luck with everything! ☺️
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