I guess I should give an update!
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
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03-31-2014, 12:07 PM #11
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- Dec 2013
03-31-2014, 01:31 PM #12
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- Feb 2014
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.
03-31-2014, 08:50 PM #13
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- Mar 2014
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-
Last edited by sleepless; 03-31-2014 at 08:56 PM.
04-01-2014, 11:55 AM #14
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- Jun 2012
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.
04-02-2014, 12:52 AM #15
- Join Date
- Jun 2010
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...
04-08-2014, 12:34 PM #16
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- Nov 2013