Posts Tagged ‘hemoglobin

29
May
17

24 Days

24 Days to my Kidney Transplant Surgery!

itsamatch

Sorry for the radio silence, but there hasn’t been much to report besides the agonizing wait we’ve been enduring to find out if TK can be my donor during which my condition has continued to slowly deteriorate. Nevertheless, let’s recap what the last couple months have been like.

J and I attended that orientation for dialysis I mentioned when it started to seem like that would be a necessity. We spent a couple hours with a guy old enough to be my dad and a guy old enough to be his dad learning the basics of dialysis I had already taught myself from the internet. What we found out was the timelines for getting on dialysis didn’t really jive with our transplant plans — it takes several weeks to get all the shit together you need to do dialysis if it’s not an emergency. By the time I would have gotten dialysis sorted out, I would have had a new kidney. So, instead, I’ve been “toughing it out”. Seems like I dodged a bullet.

It’s been pretty difficult. Every time I start feeling extra bad I panic that I’ve hit the tipping point and worry I’m going to wind up back in the hospital for weeks. It’s completely insane that I’m still so high-functioning with the shape my body is in right now. All of my important labs have been hovering around the magical number 7, which is kinda funny, but also terrible considering these numbers aren’t supposed to be anywhere near each other.

My GFR, creatinine, and hemoglobin are all hovering around 7.

My GFR would be great if it was anywhere over 50.
Creatinine is supposed to be less than 1.
Hemoglobin should be over 11.

You can see how this is very bad.

Most people are forced onto dialysis with their creatine dips down to 8, they start dying without dialysis when it gets to 6. Most people have to get a blood transfusion when their hemoglobin is less than 10. Mine’s been less than 10 for six months, but a blood transfusion will complicate my transplant so instead I’m just kind of dizzy all the time. My left side constantly hurts, sometimes worse than other times. And I’m so, so tired. But besides that, I don’t feel too rough. A few weeks ago I was feeling really bad for a few days and it seemed like dialysis on the horizon for sure, but then we figured out we didn’t taper my calcium supplements when we tapered my steroids and I was just poisoning myself with calcium. I stopped taking that and felt a lot better. I’m on my last few days of steroids, finally. When I got down to 8mg I started feeling like myself again, mentally. Around 5mg I got my face back, almost. I can tell you that the side effects of chemo and steroids made me feel worse than this kidney failure is making me feel. Nothing’s making me feel as bad as the hypertension was making me feel.

I’m still working full-time, but that’s been getting harder. I haven’t been able to do a full week in the office in weeks, requiring at least one day working from home to rest. Luckily, my company continues to be really awesome and accommodating of that. I spend most of my weekends on the couch, resting, but I try to at least go out for breakfast or see friends when I’m feeling up to it. I’ve been watching a lot of tv.

TK had to go through a whole mess of unpleasantness to find out if she could give me her kidney. And we still have the entire major surgery and weeks of recovery to look forward to! I actually have a ton to look forward to, most of which is food, but also not being tired, dizzy, and in pain all the time. Also, whiskey. And did I mention food? I guess I’ll probably still be in pain for a while, it’ll just be different. And I’ll be allowed to take pain killers again because I’ll have a kidney that works. I’m trying not think too specifically about the actual surgery. J and I were talking about it for a few minutes last night and I nearly fainted, haha. This is one of very few situations where I don’t really want to know how something works or what’s going to happen, I just want it to be over.

Unfortunately, things won’t really be over once the transplant is done. Because an autoimmune disorder is what caused by kidney failure, I’ll still have chronic kidney disease and an autoimmune disorder. It’s possible the same thing that happened to my kidneys could happen to my new kidney. The best I can do is be kind to my kidney and try to catch it earlier this time. Because I’m getting a living donor kidney from a relative, the chances of rejection are lower and I should be able to get a good 15 years out of it, at least. Science, you have 15 years to master 3d printing kidneys–chop chop!

Here’s some weird photos of how things have developed. 

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02
Dec
16

I had a very busy day yesterday!

I’m writing to you from bed because insomnia — it is midnight Friday. These steroids have made me even more efficient on even less. My body is ridiculous. I don’t know how it does this. What sort of insane beast will I be when I’m closer to “normal” health?

ANYWAY

I went to work again yesterday! It was even more awesome than Tuesday. I’m definitely getting my groove back. My ankles are swoll as fuck — I did a worse job of sitting down and elevating my legs and I’m paying for it now, but otherwise I feel great! It’s so much easier for me to focus without those headaches I was having and I’m less fatigued. The strain this extra weight is putting on my body is a new challenge, but I’m not exhausted and unfocused like I was in the weeks leading up to my crisis. Mentally, I feel like I’m firing on all cylinders again. Being back at work has been really good for my self-esteem. I feel the most like myself when I’m kicking ass at work.

Before I went to work I had my follow-up appointment with Josh. I was a few minutes late which really stressed me out, but it ended up being ok (he ended up being later–fucking doctors, man). There’s not much to report. Treatmentwise everything is still really wait-and-see. He said my urine had “less activity” which I guess means less wayward protein and other stuff that shouldn’t be in there, so that’s a good sign.

The awesome party I imagine in my urine specimen.

I got blood drawn today, he’s supposed to call me tomorrow with the numbers, so hopefully we’ll get good news there. My BP has been stable since the hospital. It’s still a little high, I’m usually around 140/90, so we’re gonna bump up one of my BP meds and see if that brings it a little lower. My energy has been really good and I’m mostly tolerating my meds pretty good. I told him I’ve been feeling sensitive to the iron the last couple days but all he did was give me his sad “sorry bout it” face, so I guess that’s just a thing I have to deal with. UGH. My body needs iron but doesn’t want it, I hate you, anemia! I’m feeling a little better now though, so that’s good at least.

I reminded him I’ve gained 20-25 lbs since being admitted to the hospital and it’s very uncomfortable. I’m definitely getting double whammied with water weight from the steroids plus edema from my reduced kidney function. Hopefully it goes down as we taper the steroids and I hopefully regain some kidney function. In the meantime, I’m allowed to increase the diuretic I’m on until I see results and explore other means of dealing with it, such as acupuncture if I want to. I definitely need to find some solutions. My ankles, knees, and back are having a hard time supporting this extra weight now that I insist on not just laying in a hospital bed all day (and even that was still hurting my back). Not to mention I only have one old pair of baggy jeans that fits peak sausage legs and I’m not super interested in buying a ton of clothes that I’ll hopefully only need for a number of weeks. Same goes for shoes. But at least shoes will still fit after. Might use as an excuse for new shoes, hehe. Also, sweaters.

The one bummer thing is that Josh thinks it’s pertinent for me to start actively finding a living kidney donor match. Because my last recorded GFR was under 20, I qualify for the transplant list, so I should prep my transplant. Hopefully this changes with today’s blood test, but even so I’ll still be pretty close to the danger zone and better to be prepared. Outlook is much better for me if I’m ready to go with a living donor and can avoid dialysis if things go south. Since my body has been pretty fucking unpredictable with this whole mess, having Plan B ready is definitely the smart thing. Once I have my consultation with the living donor program folks I’ll send out some information on how you can get tested, if you’re so inclined.

While I was having Josh Time, my parents were downstairs stalking the chemo scheduler. I don’t know how many messages my mom ended up leaving this guy yesterday on my behalf, but he didn’t return any of em. Luckily, great success in person! Mom got my next chemo treatment pushed out about a week and a half, so I get to do a bunch of things I would like to do before my next treatment potentially takes me out (mostly some important work things, hopefully our holiday party, Elora’s birthday, and my parents will be back in town). She was also able to shift ALL my other appointments for the next six months from Tuesdays to Wednesdays which is a thousand times more convenient for my existing work schedule. Huzzah! Thanks Mom & Dad!

After I put in another full day of work with a little too much standing, Brittany came over for dinner! I went to the doctor, and to work, and was social! Like a  full human being! And the only downside is my wrecked ankles. Not too shabby.

I also came a little close to having a meltdown over the amount of protein in a tortilla jeopardizing my dinner plans. But it ended up being ok because I was so skimpy with my protein at breakfast this morning (which I also paid for — I was fucking STARVING before I ate an egg at lunch today). Food is important.

We’ve been making great strides in the food department. Mom downloaded a renal diet cookbook on her iPad with a lot of super useful information and recipes to try. She made us mac and cheese out of it the other night that was pretty good and can definitely be made better with more adventurous seasonings. I had the leftovers for lunch today.

I’ve got my system more or less figured out and it’ll get better over time. Protein and salt are definitely my problem areas. Protein adds up fast, especially now that I’ve started eating some meat again and fucking secret salt is going to make it really difficult for me to eat out. I spent a lot of time the other day googling the eateries around my office to find good options and SHIT IS BLEAK. Stuff I can find nutritional information for is mostly out of the question unless it’s the ONLY thing I eat that day (duh, no can do, will starve and die), and most places don’t post any nutritional information. I can figure out protein and potassium on my own from ingredient lists for the most part, but if those fools salt things I’m fucked, so I can’t really risk it. It’s a toughy. There’s going to be a lot of advanced meal prep and packed lunches in my future. Lots of pasta and fruit and hard boiled eggs. And popcorn. I am going to learn to love popcorn (with NO SALT!).

UPDATE: I’ve waited all day long to post this for Josh to call me with my numbers from yesterday’s bloodwork.

My creatinine and GFR are the same as when I left the hospital :-/ SIGH

But, my hemoglobin is up to 9.5 so I’m out of the blood transfusion zone, so that’s good at least. GLAD SOMETHING WORKS.

I put in another full day at the office today. I am very tired. I’d like a full night’s sleep tonight. I have big plans to couch potato tomorrow. Mmm potatoes…

19
Nov
16

I bit of a mixed bag this morning.

My creatinine is up, again, and my GFR is down again (to 16, eeks).

BUT! My hemoglobin and other good blood stuff is on the rise, so I’m def starting to make my own blood again and recover from that chemo treatment. (Only possible downside to this is that my bones might start aching, so I’m on the lookout for that, but so far, so good.)

I got a full night’s sleep last night (10PM – 5:30AM!) and I’m feeling pretty good. I have a plasma treatment this morning which should be pretty routine at this point and then I have a lot of visitors on deck this afternoon — including a few special guests from LA I’m very excited to see!

I’m still a little puffy all over, but nothing like I was a couple days ago–the diuretic is making a big difference. Or, I’ve gotten used to it. Either way, I feel better.

Fuck my kidneys, man. If my birth-kidneys don’t want to be Team D anymore I’ll find some that will! My heart’s good, my lungs are good, this body is rockin — any kidneys will be lucky to find a home in here. Maybe mine will still turn it around after more rest.

All my usual doctors are off this weekend, so I got a visit from a new attending today — my first lady doctor! She’s nice, I’ll see her again tomorrow. My nurse today is Evan, who my favorite nurse Ann has been training. He’s very nice, but I have to help him a lot, haha. Luckily, my routine is pretty set at this point, so it’s not filling me with anxiety like it would have a week ago. Plus Ann’s around — already printed out my labs and divided up my meds real nice.

Harry Potter Marathon continues and Mom’s still hanging out with me. It’s raining in SF this weekend, but I’ve been flooded with reading materials the last couple days so I’ll probably have some quiet cozy reading time this weekend.

Should be a good day. I just wish they’d let me have more food.

Still not sure when I’ll get out of here. My 7th plasma treatment is scheduled for Monday, but they’re still saying 7-10 treatments.

Wasiem came by after work last night and brought me cards from the office. I work with the nicest people and I can’t wait to get back to work.

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Presumably me on steroids — thanks @kidtofer! ❤

18
Nov
16

I’M CLEAN!!!

Good fortune rains upon me today!

Yesterday was really hard, but it wasn’t all bad. Besides feeling shrink wrapped by own skin, I felt ok. My plasma treatment went smoothly, I took a nap, and I didn’t have to get a blood transfusion. I started taking an iron supplement and haven’t suffered any fallout from that yet, and they’ve put me on a diuretic to help with this excess fluid making me all puffy.

Aja and Viv came by after work last night and gave me lots of hugs, which I needed. They also brought crafting supplies from the office so we could add our hand-turkeys to the Jam City Farm. It was difficult with my shaky hands, but therapeutic, I think. It also wore me out, so I slept pretty good last night — 11PM-4AM.

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gobble gobble googly eyes

I woke up feeling good again this morning, but tempered expectations after that news from yesterday. No need!

Numbers are back on track today!

Creatinine is back down to 3.3 and hemoglobin is finally trending upwards, so my body is starting to make blood again. Progress is still very slow, but at least it’s in the right direction again. And that’s not even the best news!

First thing this morning, I received two packages!

I’ve been receiving care packages from friends and family since everyone found out, not to mention a fairly steady stream of fresh flowers. (Everyone in the hospital loves you guys for making my room smell so good all the time!)

I won the nurse lottery today!

Bea, who is usually one of the charge nurses (= IN CHARGE), was assigned to be my primary afternoon nurse today. She’s an older Russian woman and she knows what’s up. According to the staff wall, she’s the most experienced on the floor. I’ve seen Bea a lot since I moved up to the sixth floor last week and she’s always been super helpful, but she really took care of me today.

First of all, she’s got my drug schedule down — she knows I like to take my antacid first thing before breakfast gets here, then she gives me whatever I need to take in the morning after breakfast, then gives the rest of my dailies with lunch so I don’t have to take all 20 pills at once. Super nice.

After days and days of everyone saying I wasn’t going to be able to take a shower with my central line in, Bea today is like let’s wrap that thing up and get you a shower! O M G! Jess immediately brought over some real shower stuff for me because she is The Best Sister Ever and after I finished breakfast, Bea wrapped up my neck, found me a chair for my shower and

I had the greatest shower of all time!

It was actually a weird shower. I had a hard time negotiating the tiny shower with that chair in there and banged myself up pretty good (thanks for the bruises, anemia), plus I was pretty worried about getting water under my bandages, and I couldn’t use water that was too hot (thanks, anemia). BUT I’M CLEAN NOW. I’VE EXFOLIATED. I FEEL AMAZING. I took my time and washed everything like five times. It was glorious. While I was in there they refreshed my bed linens too, so everything is clean.

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I’m clean!

Afterwards, Bea completely redid the dressing on my neck and it feels a lot better. My neck is still pretty much covered in old adhesive, so I’m looking forward to washing that eventually, haha.

One of the only channels I get in here is having a Harry Potter marathon all weekend. Mom’s never seen them, so we’re having fun with that today.

After lunch today, Mom and I went outside for some fresh air. It’s super nice out today, not freezing like last time, so we did a few laps around the terrance in the sun. Definitely the most I’ve moved around since I got here, it’s been an active day. I’m pretty tired now, so I might take a nap before I start having visitors. Brittany’s coming by later, and I’ve gotten some other offers for visitors as well. I have a bunch of people coming by tomorrow — including Alex who is flying up from LA and staying until Sunday!

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I’m back on top! Makin some of my own blood again and still functioning pretty good with bum kidneys!

16
Nov
16

Yesterday was a good day.

Yesterday was a good day.

Although my hemoglobin is still garbage (5.7), I continue to not be struggling with it at all, so I continue to dodge the blood transfusion. My attending is going to talk to my oncologist consult today about how much longer he thinks I’ll be chilling in the nadir. In the meantime, so long as I don’t faint, I’m ok.

My creatinine was down 0.01 yesterday, which is teeny tiny baby steps in the right direction — but in the right direction, finally! It’s a little lower today, down to 3.31! Inching closer to 3, which is great. Not sure what my GFR is at, but presumably holding around 18.

When Josh dropped by yesterday he was all smiles. Very encouraged by my slowly moving numbers. According to him, our next major decision point comes in a few weeks when we’ll decide if I do chemo again. We didn’t talk about what would we do if we didn’t do chemo — I’m assuming that’s the “it didn’t work well enough” scenario, which we don’t want to talk about yet. According to me, our next major decision point should come next week when we decide if/when I’m going home.

Plasma Apheraesis went well last night. They gave me frozen plasma, but loaded me up with more steroids and benadryl ahead of time this time, so I didn’t get stuck with another bad rash. IV steroids + IV benadryl + O2 made a super fun cocktail in my body! That’s the closest to drunk I’ve felt in months. I got a surprise nurse again, but she was really nice and calming and hooked me up with that O2. Cole dropped by right as I was hooked up to all five machines and was a very good sport about not acting like that was super weird. It was a very pleasant visit.

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THIS O2 YOU GUYS

Eventually the benadryl won and knocked me out for about 5 hours, the most consecutive sleep I’ve gotten in 10 days. Dad kept his snores to a minimum last night, so it was restful for everyone. Then I woke up at 3:30AM feeling super clear-headed and productive so I wrote four work-related emails on my iPhone in bed, reflected heavily on my twenties, and started planning the long-term life goals of my thirties. Got blood drawn at 5:30AM and fell asleep again for about an hour after that.

Feel great this morning, going to try to get some work stuff done. The only thing on deck today is the hormone injection, so it’s a great day for visitors!

Fog finally lifted in SF this morning — check out my killer view!

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15
Nov
16

The Chemo Nadir

Tonight, I am due to hit what is called “the nadir” of my first chemo treatment.

terminator

Get it?

First of all, did you know they use chemo to treat things besides cancer? I had no idea. I received a chemo treatment because it was the most expedient way to “turn off” my immune system. We think my immune system is sending confusing messages to my kidneys and gumming up the works, so it was important to hit reset and start damage control.

The thing about chemo is, it shuts down A LOT of shit. A significant amount of the treatments I’ve had to go through the past week had little to do with my kidneys and everything to do with combating the negative effects of the chemo. My white and red blood counts started dropping dramatically, making it basically impossible for my body to produce red blood cells when combined with my extreme anemia, making me fatigued and shaky. I had to undergo two very painful iron infusions to get my levels high enough to support a few days of hormone injections so my body can hopefully start making red blood cells on its own again. (I’m literally doping like a professional athlete right now — steroids + hormone injections.)

My white blood count — the immune system part — is also tanked, which is intended but not without consequences. I’m taking antibiotics everyday and they’re constantly taking my temperature to make sure I don’t have signs of an infection. (So far, so good!)

The nadir is the point at which all your levels are at their lowest after receiving a chemo treatment. For me, this was estimated to occur a week after treatment. I don’t know if this is true for people on different doses, or what, but I’m due to hit mine tonight.

As of this morning, my hemoglobin (red blood count) is no longer in free fall — it’s holding steady at 5.8, which is dangerously low. Anything that dips under about 10 is usually an automatic blood transfusion. We’re trying to avoid that, as receiving a blood transfusion now could make it more complicated for me to find a donor match down the road, should I need one. I’ve also shown a tendency towards allergic reactions recently and the blood transfusion is unlikely to be pleasant for me. Because I’m slated to spend the next week in the hospital resting and I’m not reporting dizziness, shortness of breath, or fainting we’re holding off until a blood transfusion becomes an emergency and hoping the other interventions we’ve made to boost my red blood count work in the mean time.

This is making my nurses exceptionally nervous and causing a bit of friction between some of my doctors. Luckily, my two doctors who are mostly in charge — Josh, my nephrologist, and my attending are in agreement with me that until I need the transfusion to live, I can suffer through a few days of fatigue since I’m mostly just laying around anyway.

It’s encouraging that my hemoglobin is stable today. Hopefully this means I’ve reached the nadir and I’ll start getting better from here.

As of right now, the plan is for me to receive a chemo treatment once a month for six months — assuming my kidneys start regaining function and we consider the treatment successful. I don’t really know what that means for me long-term. I guess we’ll find out next week when we formulate our long-term treatment plan, but I’m super not looking forward to doing this on a monthly basis. From what I understand, I’m receiving a relatively small dosage compared to someone receiving chemo for cancer, for instance. It’s unlikely I’ll even see any hair loss and might even keep my fertility. We shall see. Fingers crossed I don’t faint today!




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