Thursday, January 27, 2011

The Red Kidney of Courage

I know its high time for an update, and if you know me you know that I have no excuse and I've just been wasting time watching silly videos on the internet and playing video games. However despite my laziness we do have a lot to update everyone on, and a few things that I think are worth talking about.

First of all Dialysis is going what I consider 'well'. The first week few days did not go great and I was feeling very ill. This would be all well and good except Liza's surgery was on the day after my 3rd Dialysis treatment. That night I spiked a fever of 103.4, but I was way too worried about Liza's upcoming hospitalization to consider any kind of medical care beyond taking a few Tylenol and waiting it out. It was a very stressful morning and I have to say I appreciate that Liza has enduring my own surgeries so well.

Once they took her back I could not sit still. I was fidgety and couldn't help but wander around the hospital, just looking for either a distraction or a way to pass the time. Eventually I found my way to the Transplant Clinic downstairs, as I figure that if my nurse was available I could tell her about my fever and see if things had improved.

However I did not realize how dire a fever of 103.4 was, and she immediately sent me to the Emergency Room to be admitted, tested, and monitored. So while Liza was going through surgery a few rooms down, I was lying in an ER bed while they made sure my fever wasn't a sign of a life-threatening infection. Of course this meant that when Liza finally regained consciousness I was stuck in the ER department plugged into all kinds of machines, not allowed to leave to see how my wife was doing. She did manage to find out what had happened to me and called me at my ER phone from her Recovery Room phone. Fortunately my Mother was with us and was able to act as a go-between, keeping track of both of our locations so we could stay in contact until we were both given a room (the hospital doesn't allow more than one person to a room).

So now here we were, on the eve of our 4th Wedding Anniversary, sleeping in separate hospital beds. Liza obviously had it worse, as I believe the incision they gave her is bigger than any of the 3 or 4 that I have. It was a rough couple days but we managed to make it through and we were both released from the hospital before the weekend of the 15th.

For the first week after our release, neither one of us were really ready to drive (Liza is still too sore and drugged up to operate heavy machinery), but we had help from my incredible Aunt Jackie - who flew in from Philadelphia just to help us with our every day activities. She drove me to and from Dialysis and work and provided us with groceries and company while we got our bearings. Liza also had a veritable army of friends visiting her and making sure she had plenty of company to show off her knitting prowess. We really are fortunate to have so many people willing to help us out and lift our spirits.

Things have kind of calmed down now. Liza is on the way to recovery and is much more mobile, able to get around the house with relative ease. She's got plenty of knitting, weaving, spinning, and kitties to keep her occupied over the next few weeks of healing. I am also feeling much better, and haven't had another fever spike due to dialysis yet. I'm even able to drive myself now!

Dialysis is certainly an interesting feeling. There is something just a little unnerving knowing that there is a plastic tube on my chest that is, more or less, connected directly to my heart. If something went wrong with this 'perma-cath' I could bleed to death in under 2 minutes, if I recall the nurse's briefing. The actual process of going to Dialysis isn't really as much of a chore as I'd imagined. It's right down the road, they have a comfortable seat for me, they plug me into my machine, and I either nap or play my gameboy for 4 hours. That isn't to say that it doesn't have its complications. Right now they are trying to determine the best level of fluid in which to remove from my system during each treatment. I must admit I don't know the technicalities, I just know how I feel afterward. If they remove too much I'm jittery and I experience sporadic cramping. These cramps aren't messing around either, once they start I'm usually writhing in pain until the nurse pumps me full of fluids again. The cramps continue after the treatment is over, but I guess that's why they give me the good stuff in the little bottle.

Hopefully in the next few weeks the cramps and pain will have evened out and Liza will be well on her way to recovery. In any case, that's how things are going on our end!

Monday, January 3, 2011

The Old Kidney Shoppe

I don't know why but Dickens' story titles lend themselves well to inserting the word 'Kidney' in them. Purely coincidence, I assure you.

Well it's been too long since we've had any updates for this blog, which honestly was kind of a mixed blessing. My health was more or less stable for the past 2-3 weeks and aside from a few adjustments to my medications, we thought that maybe things would be going smoothly until we were ready to go through with the transplant. That turned out to be wishful thinking, though.

This week's Monday labs came back with less than stellar results. My Creatinine has risen to 8.8, which is more than 10 times what 'normal' is, and about 5 times higher than normal even for me. In addition my 'Creatinine Clearance' is at around 8. Creatinine Clearance roughly translates to the equivalent percent of kidney function, so that means my body is functioning at roughly 8% of a normal person's kidneys. All this wouldn't be so bad if the symptoms were under control, which they really aren't any more. I get winded walking a few steps, I sleep much more than is normal, I'm fatigued, and I'm losing weight due to lack of any real appetite.

So that means that this week I'm going to go on Dialysis. They want to make sure I'm in the routine and everything is squared away with me so that I can be prepared for next week when it's Liza's turn to be the patient. Her surgery is now only a week away, and I'm going to need to be able to take care of her post-surgery needs and my own dialysis-related health issues. It's going to be a rough couple of weeks, but we have friends and family here to help and we're 'lucky' enough to be very familiar with the hospital that all this will be occurring at.

I'll try to update this again once I know exactly how Dialysis will affect me. I'm hoping I'll ultimately feel better, but everything I've been led to believe about Dialysis has me concerned that it will only make me feel even more tired and run ragged.

Tuesday, December 21, 2010

A Kidney Carol

Well I'm happy to report that with Christmas coming up neither of us will be spending it in the hospital. Liza's lab results have looked good with no cancer showing, and my symptoms have been under control enough that the doctors feel I can stave off dialysis for at least another week. We're both not feeling fantastically healthy, but all the outpouring of love and support we've received just since starting this blog and opening the fund have lifted our spirits more than anyone can imagine. Everything you've given is greatly appreciated, and because of you we can look forward to the upcoming year with a certain degree of hope and optimism.

We've also received some good news from our financial coordinator, and it looks like Medicare has decided that I can be allowed back into the part B program as soon as the paperwork clears. Presumably this means that the transplant clinic can begin work on finding out which of my potential donors will be the best match. We've already attended both the donor (for Liza) and recipient orientation seminars to get us back up to speed on what the whole process entails. Both orientations basically consist of the same slide show presentation that walks us through the steps of a transplant - from initial contact with the hospital all the way through follow-up care.

Earlier today we met with our financial coordinator again as part of this ongoing process to make sure that we can actually afford to pay for everything. It was a little frightening to see all those costs laid out before us like that again. There's just something about seeing all those numbers stacked up that stresses me out. It's not just the cost either, I think I have an inherent fear of math.

Next on the agenda will be some preliminary meetings with members of the 'Transplant Team', which will likely occur on the 13th of January. This will include meeting with dietitians, nurses, clinic staff, and our surgeon to discuss everything from the technical aspects of the surgery to how follow-up appointments will be scheduled. Its something I'll likely have to attend alone, as it occurs 2 days after Liza's surgery. I guess I'll at least be in the neighborhood!

In any case Happy Holidays and Merry Christmas, and here's hoping for more good news next week!

Monday, December 13, 2010

The Taming of the Kidney

So yes, on top of all of my kidney related health disasters the world saw fit to place a tumor the size of a foot on my wife's ovary. While children were never really an option for us, or even a desire, this will ultimately put the nail in the coffin of any prospective offspring. Sorry, Mom.

However more importantly, to us anyway, is exactly how we're going to manage any kind of day-to-day functionality with all of the medical procedures that are coming up. We are both going to be having major surgeries which will essentially disable us for 6 weeks at a time, each. It is very likely that there's going to be some overlap in our recovery period. Not only that, but now we have two surgeries that we're going to have to find a way to budget for. All of this on top of a newly rekindled discussion about whether or not our government has a responsibility to provide its citizens with access to affordable health care. I'll try not to politicize this blog too much, but needless to say we here at Kevin's Kidneys think that they're all a bunch of liars and thieves.

However there is some good news in the saga of my renal health! At our appointment today we learned that my kidney function has improved slightly, which means that I can go a while longer without needing dialysis. This is kind of a mixed blessing. Dialysis would make me feel less nauseous, improve my appetite, relieve some pain, and in general make me feel better - but it carries the risk of infection, puts stringent restrictions on my diet, and I've been told the process is very 'draining'. Staying on dialysis for an extended period of time can also lower the possible success rate of future transplants.

Another issue is that my kidney function isn't yet considered 'bad enough' to instantly qualify for dialysis according to our Health Insurance companies. Until my kidney function drops below about 10% of normal, insurance companies will refuse to pay for dialysis. If my doctors considered it medically necessary, they would have to write letters and give reports basically begging my insurance company to allow them to treat me.

So until my kidney function gets low enough for our insurance to be okay with dialysis, the doctors have given me a medication known as Lasix. Lasix is a diuretic - a drug that basically flushes excess fluids from my system. This will reduce some of the swelling and alleviate the shortness of breath I've been experiencing. It may even improve my appetite a bit and keep me feeling healthy while we wait for dialysis or a transplant. It will also make me need to pee more often than a new puppy with an overactive bladder, but you take the good with the bad.

In any case, I hope I'll at least be feeling a bit healthier within a week or two. I won't actually BE any healthier, but it would be nice to not have to sleep for 16 hours every day.

Friday, December 10, 2010

Ovary Twist (apologies to Charles Dickens.)

Ovaries. Kevin doesn't have any, but I do and apparently they're rubbish.

I never thought I'd get to a point in my life, before I was over 60 anyway, that I could say "my husband is dying" and not be melodramatic in the slightest. Right now, my husband is dying of end stage renal disease. He gets out of breath walking from the bedroom to the living room. He gets out of breath getting dressed. The other day he was standing in the kitchen eating pringles and literally got out of breath chewing. Kevin also has edema in his feet and ankles. Edema is a fancy word for swelling. His kidneys are just sitting around being useless, so it's not filtering out salt and water the way it should. If this is left long term, people develop congestive heart failure.

I might have been ignoring any potential health problems I may have, but I am generally healthy. I have high cholesterol, tooth decay and weight gain (there is a direct correlation between those). I just had routine lab work last week and everything came back completely normal. At my appointment last week I mentioned to my DR that I noticed a hard lump in my abdomen, mostly on the right side.

The DR did an exam and felt around and seemed surprised at the size of the lump, which is apparently more of a massive growth than a lump. She said I'd have to go for a CT scan to see what it's attached to. She said it's fast growing and likely benign since I don't have any other symptoms. She also said that it would have to come out.

CT scan came and went, and the radiologist reported back that I have a 17 cm growth that appears to be growing upward from my right ovary. (17 cm is about 7 inches). It's also several inches wide. My DR called and said that it's large enough that it's pushing against my right kidney, but the good news is that there are no other lumps anywhere which again points to benign, and she's sending me to a gynecologist who will check it out and do the surgery to remove it.

The gynecologist was much less optimistic than my PCP. She said that she needs to test and see if it might be cancerous and that she will call a gynecological oncologist and consult with them.  She explained that although it seems like it's benign you don't know until you test. She wants to have an oncologist on standby even if the blood work comes back normal. She explained that she'll perform the surgery if it looks benign, but if any test comes back with funny results, the oncologist will be doing the surgery. She said to expect a 6 week recovery time from surgery and that only if I felt really fantastic could I go back to work in 4 weeks. She sent me for blood work to test for tumour markers as soon as we left her appointment, and by the time we walked out of the appointment room we were told that she was already on the phone with the oncologist.

We'll have the results back by mid next week. I am trying to be optimistic that this is benign. She told us that I will likely lose this ovary. She broached this subject carefully, probably being used to women who dream of having children. She looked quite relieved that I had no such dreams and told her to just yank it out. The DR said that the CT scan shows it to be mostly fluid filled, so it's more like a cyst. I was under the impression that it was solid tissue. I'm not sure where I got that from. We were hoping that I was spontaneously growing a kidney for Kevin. Apparently not. Bummer.

This news comes at what I can, again without being melodramatic, call THE WORST TIME. Kevin is about to have another transplant surgery, right now he's feeling ill all the time and will probably start dialysis next week. Ideally, I'd want to delay me having a surgery until Kevin is done and all better, but this thing is fast growing and need to come out as soon as possible.

It felt odd to have places switched today, with me on the exam table and Kevin in the normal chair. I told him "now you know what it feels like to be the concerned spouse". Kevin replied that he does not like it.


Monday, December 6, 2010

A Kidney to Remember

I think a good way to start this endeavor is to explain our current situation, and how we came to need the help of a fundraiser. Both my wife and I are employed full time and pay monthly premiums for our employer's insurance. Liza works for the State of Texas Department of Family Protective Services, and I work for the University of Texas Division of Housing & Food. We get what we considered to be very good insurance through our employers (Blue Cross Blue Shield of Texas); and while (like any insurance company) we've had to wrestle with them on nearly every bill, they have been keeping us out of the poorhouse when it comes to medical expenses.

I also qualify for Medicare due to the nature of my disease (it falls under the category of 'End Stage Renal Disease' or ESRD). Now normally we wouldn't have thought that Medicare would be necessary, since we were doubly insured through out work - but neither my insurance, my wife's insurance, nor my Dad's insurance are legally allowed to pay for the living donor (my Dad) part of the transplant surgery and care. Transplant patients are required to enroll in Medicare who then covers the donor's surgery costs - an excess of $100,000.

So since May of 2008 I've been covered by my employer's insurance, my wife's employer insurance, and Medicare. We were under the impression that Medicare was only necessary as a means to pay for the donor's part of the transplant care. After about a year we allowed Medicare part B to drop by no longer paying their premiums. Part B is the division of Medicare that pays for outpatient procedures, doctors visits, and prescription medication - all things that were covered under my employer's insurance. We felt there was no reason to burden the Federal system unnecessarily, so we let part B lapse.

Apparently that isn't something we should have done. You see, after a period of 30 months after the transplant, Medicare automatically takes primary responsibility of a patient's insurance claims. This is due to a coordination of benefits deal Medicare has with employer insurances to help spread out the costs. This is something I'm sure we were told along with an entire encyclopedia's worth of other medical, insurance, and general health related information during my initial hospital stay back in 2008, but had since forgot.

So now it was November of 2010 and Medicare was suddenly our primary insurer, with our employer insurance taking over the secondary and tertiary duties. That would be all well and good if it weren't for the fact that we had let part B expire. Now we were eligible for part B, but were not enrolled. This led to a situation where our employer insurance would refuse to pay for outpatient procedures, doctors visits, and medications because those things should be paid for by Medicare part B. We thought 'oh well, we'll just re-enroll in Medicare part B!' Well not so fast. You can only enroll in Medicare part B between January and March, and part B would not go into effect until July even if we did enroll during that period.

This meant that I would be essentially uninsured for outpatient procedures, medications, and doctors visits until July. I don't know how familiar you may be with the costs of health care, but that would be astronomical. One of the anti-rejection medications I need to take in order to keep my kidney from dying costs more than $3,000 for a one month's supply. Doctors bills and outpatient procedures range from about $500 to $10,000 depending on the work done. Even with our insurances working as they should, we have approximately $300 out of pocket medical expenses every month. Without the benefit of insurance we would have to be millionaires in order to survive, and even then we wouldn't be millionaires for very long.

This would all be a lot to worry about if all was well, but my Dad's gift of a kidney from 2008 was failing and going into acute rejection. I've been getting progressively sicker since about July of this year, and that was all coming to a head at the same time these problems with insurance were surfacing. In the first week of November the doctor told us that all the treatments they attempted to halt the rejection had failed and it was time for a new transplant. When the transplant workup started and our insurance was reviewed, we were told that we essentially had no insurance, and it was becoming clear that I was going to need a new kidney very soon. In the beginning of December, with my health steadily failing, the doctor ordered that I be put on emergency dialysis.

The transplant clinic staff told us that they thought dialysis would be covered by the Texas Kidney Health Care program, a program under the Department of State Health Services. When patients with no insurance start dialysis they apply for Medicare which then kicks in after 3 months and does not pay retroactively. The Kidney Health program then picks up the first three months of costs. We scheduled a surgery for dialysis 'port placement', but when we started asking them who would be covering the costs, they didn't know and we had to cancel the surgery and postpone the emergency dialysis. The dialysis was, and remains, on hold until we can figure out who will pay for it.

My transplant nurses had to call a supervisor at the Social Security office to explain that waiting until January to re-enroll in part B would not be an option for me, as I would not live until July to get treated. Fortunately we may have struck a deal with Medicare that will allow us to pay back premiums and get us reinstated in part B retroactively starting December 1st. I have my loving Mother and Father to thank for loaning us the money to pay Medicare what essentially comes down to a ransom for my life, an amount approaching $3,000. My parents exhausted their savings in order to pay this amount, my wife and I are barely making ends meet, and we just went through nearly an entire month of medical procedures and appointments that may not be covered by any insurance, which means we'll carry financial responsibility for all of it.

We're still waiting to see if Medicare part B will really actually be reinstated and pay for dialysis before I can get the treatment I need. Until then we're hoping my health doesn't deteriorate to the point that I need to be hospitalized, because we honestly have no idea how we'd pay for it. We're doing everything we can to keep our heads above water and avoid filing for bankruptcy. As a last resort, the hospital financial coordinators suggested we start a community fundraiser with the National Transplant Assistance Fund. We never thought we'd be asking for charity from our family and friends, but sometimes you have to realize when you can't do things alone and there's no shame in asking for help.

The Tell-Tale Kidney

My name is Kevin, and welcome to the ongoing adventures of my kidney health! My wife and I decided to start this blog as a way to keep family and friends updated on my health and well-being, but also as a means to document everything that happens from diagnosis until long after a successful kidney transplant for anyone that might be curious. When I had my original kidney transplant in 2008 we found that there really wasn't a lot of information out there about what a transplant actually means for a patient and his or her family.

Well, its two years into the life of the kidney my father gave me, and its time for another transplant. While this is going to be a difficult time for my wife and me, we'd like to share our experiences here so that anyone who's curious as to how things are going with us (or just how things happen with any prospective kidney transplant) can check in. We figure if we're going to ask you to help us pay to keep me alive, the least we can do is keep you up to do date on how that endeavor fares.

More to come later!