Jared and I went to UCLA (where he will eventually be getting his transplant) and they said that they want to wait until he is under 10% function and/or starts having side effects before they do the transplant. He is currently between 12-15%. They said this could be months or years before this happens. With good blood pressure control, his kidney could last a lot longer than we originally expected.
Unfortunately, we haven't had a blood pressure medicine that works without side effects yet. Does anyone have any suggestions?
"Sleepless"- what medication are you on? Also, can you tell me a little bit more about your story? Would love to hear
I was diagnosed with IGA Nephropathy when I was 18 (1988). I'll be 44 in May and I'm currently at between Stage 4/5 with a GFR of 22. I'm on the same BP meds as your husband was on and had similar side effects with the right ankle, but not too often. When it would swell I could barely walk, but it does has my bp under control. Prior to going on meds my bp was as hi as 275/150. I dealt with high blood pressure for years, ignoring it, and I've paid the price. The high BP has significantly damaged my kidneys, but stable. Best of luck and God bless.
Chantell- I am currently on an ACE inh, metoprolol (a Beta Blocker) and amlodipine (CCB).....my BP was out of whack for a year or so because I relaxed and didn't check it as aggressively as I should have when I was on an ACE and ARB together (~140/~100). Since the new regimen plus a weekly Vitamin B supplement I am now averaging (~105/~72). Before I was diagnosed with FSGS most of my other numbers (phosphorus, calcium, etc) were just marginally over- other than you know my GFR- which is around 25 right now.
I have made some real permanent changes in life which I believe have also helped slow this down a bit including exercising 40 minutes on most days (with a sweat suit on- to help rid wastes including salts more from body), drinking 2-3 litres of water a day, drinking nettle leaf tea in morning, taking BP meds religiously and keeping close track of BP with records, avoiding all animal proteins, any kind of coffee, tea, milk products or gluten products and of course praying. I used to love my proteins which helped me lose almost 85 pounds and rid my body of diabetes, now I LOVE my salads! Last but not least I have jumped on the learning curve to learn as much as I can about the disease. Luckily I am in the healthcare industry so I see lots of innovation ahead for people like your husband and I...but that is around 2020-22. We gotta hang on until that point. But if and when the time comes I will be on the transplant boat- so I have strated laying the foundation for it now by spreading the word to family and friends- and they have been quite supportive.
I am with your husband on the transplant- from everything I have heard.....I have concluded I do not want to be on dialysis. The fact is that what we need is something that can replace the function of the kidney- i.e. filter out the wastes 24 hours a day 7 days a week. Attempting to do the same for three times a week or even a few hours every day is a prescription something to go off. For me.....I am only 42, have a great wife, two beautiful young girls, a good career and zest for life- I don't want to throw in the towel yet........if I end there so be it- but I will not let this dragon take me down without a fight. I have put myself through grad school in near poverty, beat obesity and defeated diabetes.....I ain't sure as hell going to spend my days stuck on a needle- if I can do something about it.
Sorry for the blah blah extended note- I need to hear myself do the locker room pep up so I can keep my chin up through this-
Your desire to avoid dialysis via transplantation is admirable, though somewhat wishful. Transplantation is a demanding course for both recipient and donor. The medical approval process for both is long and very expensive, with no guarantees of approval for either. The health requirements for donors is even more stringent as their longevity cannot be compromised by the loss of a kidney.
Transplantation is major surgery, which typically requires three days of hospitalization. Recovery is more difficult for the donor than the recipient owed to the invasivness of the surgery. There is no assurance that the loss of a functioning kidney may not degrade overall kidney function, e.g. increase in creatinine, reduction in GFR, immediately or over time. The recipient medication requirements to prevent rejection are extensive and expensive. There is a constant threat of infection from even the common cold because of a repressed immune system (needed to prevent rejection of the transplanted kidney).
There is only a general range provided on the useful life of the donated kidney - living or cadaver. The variables that go into determining how long the transplanted kidney will survive are myriad. I just read an article in my city's Sunday paper about a middle aged man who is looking for his second kidney transplant. He is currently on hemodialysis three days a week, and it is taking a toll on him. He was quite surprised when the kidney donated by his sister some 10 years ago recently failed. Even with excellent genetic matching, as in this fellow and his sister's case, the donated kidney failed to survive for more than 10 years. Under ideal circumstances, a live donor kidney can be expected to survive 15 to 20 years. A cadaver kidney can be expected to survive 7 to 12 years. Even these are gross estimates.
There are many individual contributors to these forums who have been transplanted several times, generally starting at a fairly young age. Nearly all of them had to undergo dialysis at some point to remain healthy while waiting for a transplant.
I had 10+ years to think about and plan future actions to respond to a PKD diagnosis that would lead to eventual kidney failure. I was accepted for a kidney transplant in January 2011. I had an AVF (fistula) placed in October 2011.
I started home hemodialysis training, and with it hemodialysis, in July 2012. I was not sick and did not have any physical symptoms of kidney failure, though my creatinine (6+) and GFR (9) and BUN (60+) told a different story. I had the full support of my spouse/care partner and a competent HHD team, including my nephrologist of 10+ years to assist me in the effort. I was listed with a second kidney transplant program in November 2012.
I've now been waiting for a cadaver kidney for over 3 years. When I was first listed I was told that with my Type O blood, it would take between 3 and 5 years before a cadaver kidney would be become available. In the mean time, I must submit PRA/HLA blood antibody samples monthly to each kidney transplant program and undergo periodic testing to remain active on their respective lists. The additional testing is at my expense. I must also visit with the respective transplant program's coordinator, transplant nephrologist and social worker every 6 to 9 months. The hoops I have to jump through just to remain on the transplant list are appreciable.
If transplantation had been my only strategy to assure continued life, I would not be writing this today. HHD has given me the freedom and flexibility to continue an active work and play life and provide me with the good health needed to stay qualified for that elusive and eventual kidney transplant. I'd like to hold out for as long as I can, staying on my HHD regimen, knowing that there are plenty of unknowns with a kidney transplant not the least of which is the life of the graft (transplanted kidney), and the strong likelihood that I will be back on hemodialysis.
Hello! Jared is doing well. He got off of the Amlodopine and his swelling went down immediately. He was having pain in how feet after work too but when he stopped the medicine, that went away. He was on lisinpro and that dropped his blood pressure to normal (we were so happy) but the doctor found out that it increased his potassium to dangerously high levels. He is now on cardizum but he doesn't like it as much because he doesn't feel like it's helping his blood pressure. We hope to find a good medicine for his BP soon.
You should definitely talk to your doctor about getting off that medication and onto another one without those side effects. My husband was a lot better off after stopping it! Good luck to you, I hope your doctor can help you find a better medication.
Thank you for answering my post Chantell.. I am so happy to hear that Jared is doing much better.. and I know that the Amlodopine was causing the swelling.. I haven't stopped it yet.. I will see the doctor this Thursday... we need to have a good talk.. I am watching my salt intake and fluid too..
I've also had many bouts with high/low potassium... I forgot the name of the medication they gave me to drink to lower it... slipped my mind.. I was also on lisinopril... for BP and my Dr. took me off that.. as it was really not helping me.. Thanks again for the reply...
I just joined this forum so this is my first post! My husband, Jared, was diagnosed with Chronic Kidney Disease (somewhere between stage 4-5) last month after a routine blood test. The doctors discovered high levels of creatinine in his blood and protein in his urine, his blood pressure was 160/110. This was quite shocking to both of us since Jared is 25, healthy (or so we thought) and we have only been married for 3 years.
The weird thing is...he has NO symptoms. He feels the same as he always has!
Our primary doctor sent us to a nephrologist and urologist. After a CT scan and Ultrasound, the kidney doctor discovered that one of his kidneys is basically not working and the other one is functioning somewhere between 15-18%. The next week, our urologist installed a stint in his ureter after discovering a kink in his ureter and is hoping that this will relieve some pressure from the kidneys and possibly reduce his creatinine levels (we are still waiting on the results). Even if the stint helps, Jared will still either need to go on dialysis or receive a kidney transplant.
Currently, Jared is taking Amlodipine Besylate (generic form of Norvasc) and has experienced swelling and pain in his right ankle. At first, we thought this was a blood clot and rushed him to the hospital (this was a couple of days after his stint procedure) and had an ultrasound done on his leg, the tech discovered no blood clot. The ER doctor sent us home and told us to come back if it got worse. The next day, Jared met with his kidney doctor who told him that this was a side effect of his medication. A couple weeks later (last night), Jared's left ankle began to hurt. We are assuming that it will follow the course of the right ankle and begin to swell within the next couple of days. Is anyone else on this medication and has experienced the swelling of the ankles? We are considering switching medications but are hesitant since his BP lowered to 136/90 since taking it.
We are going to start looking for kidney transplant matches within the next couple of weeks and Jared will be undergoing tests and the surgery (if needed) at UCLA this next year. Thankfully, we have plenty of family and friends (myself included) willing to donate, we just need to see if anyone is a match. We are praying and hoping that at least one person will be!!! My husband is hesitant to let anyone donate for him. He is afraid of something happening to the donor or that the donor will need their kidney some time later in life. For this reason, he is hesitant to let anyone close to him donate.
Anyways, that's my story right now...I am writing to see if anyone has a similar story or can provide any insight. This is new territory for us and we are scared and unsure of what will happen next!
Hi, I know this is an old post but I hope things for Jared have gone well since December. I started dialysis in October. Let me give you some history. I was first diagnosed in July of 2010 (stage 3 at that time). For 3 years, diet and monitoring was the treatment (and lots of meds to get my BP down). My kidney disease (now stage 5) was a result of diabetes. I was once well over 300 pounds, lost over 100 of it, but not before the damage was done. I am also on amlodopine. 10 MG a day (was at 10 MG in morning and 5 MG at night, but my blood pressure after being on dialysis for six months is actually a bit low now). Also, tell him not to be afraid of dialysis. I am not saying it is easy, but knowing how I felt right before going on, if his doctor feels it's time, it most likely is (you can get a second opinion if you choose, but I have a feeling how he feels he will know too it's time. I can say that since I started dialysis I feel much closer to "normal" than I have in years. Yes, the time is a pain but having a better quality of life to me is more important than the quantity. And don't be afraid to get the word out about donations (kidney). If you don't feel comfortable flat out asking, put it up on facebook, just make it known how to call and any basic info the hospital where he is being tested provides. And most importantly STAY POSITIVE! By this I mean both of you. That is one of the main ways to beat this. I can tell you that (despite having several close friends that mean equal to me) if it wasn't for two of them, I might not be here today. Hang in there!