A'salaamu alaikum ya'll.
I am not even pretending to be perky and uber-upbeat. I really pasted the smile on after I saw what grimace I was wearing in the first pic. :-) I was past exhausted. My body doesn't wanna move sometimes. Is so weird, like I'm underwater and have weights tied to my ever muscle fiber. Sometimes I'll lie there and I'l hear a text come through and I just look at my phone and think, despairingly, do I have to MOVE to get it? And by move I mean lift my arm.
It's crazy. I've done dialysis, both modes (hemo and peritoneal). I've had a transplant, I've now done plasmapheresis which means I've done just about every modality of treatment available to a patient. Subhanallah. The tiredness I feel it overwhelming. It's a combination of the treatments themselves and my low redblood cell count (anemia) which has been dramatically worsened in the past 12 days by my condition and treatment. The plasma exchange damages the cells in the removal and spinning process. I'm down to 24% of my blood being RBC; typically a woman should be 40%, give or take. I usually hover around 35% so this is a big, fast drop for me!
Think running really hard uphill and everything taking that amount of effort. Yeah, nice. Going to the bathroom, in my small little room here, is a monumental task. If I already used that term forgive me. :) By the time I've plopped back down on the bed I'm out of breath and my heart rate is about 140 bpm. Subhanallah. Typically my hr with low exertion is 75. So just trying to give ya'll an idea of the stress my body is undergoing right now.
The treatment consists of 2 parts. Day one you get a 10 hour infusion of human immunoglobulin via iv. That in itself is hard for me because one, I have crappy veins and it took 15 attempts to place my last iv in my hand. It eventually went south after 7 days alhamdulillah and it was another 10 attempts to place a new line. My poor arms are dark purple with bruises. The prednisone I've been on for so long makes your tissue fragile and that includes your vasculature. So bad veins by birth and circumstances, great! :-)
Anyway so a 10 hour infusion one day of human immunoglobulin. I get this dose of antibodies to annoy/irritate the antibodies that are currently attacking my kidney. Hey, don't hate, it's their job! They are our front line of defense against infections and normally we love those little suckers but when they get miswired and attack our own bodies (which is what my original disease, Iga-immunoglobulin A- Nephropathy does anyway) it's a baaaaad thing.
So now my antibodies are damaged insha'allah and a bit swollen which makes the next step of treatment, day 2, work. The damaged antibodies spin out with the plasma and is discarded. This is how they are attempting to stop my rejection insha'Allah! Today is my fifth and insha'Allah final of the 2-part process and I'm ready to be done.
The treatment itself is a bit unnerving but mostly because when there is a calcium deficiency in your body you feel weird. By deficiency I mean blood serum. Our bodies need calcium for more than just bones, it's an intergral component of proper muscle functioning. The plasma exchange pulls of some of that calcium and it's lost and must be replaced. For some reason, I very susceptible and almost immediately when on the machine I begin to get very numb-tingly lips and feet. They slow the rate, they up the calcium and it abates. 3 minutes later it's back. So basically it's a huge mental feat for me to not let myself get freaked out.
Oh and you also get sooo cold! They do re-warm the blood/fluids going back in but not the exact temp and the first shots are cold. So it lowers your body temp and you have some weird shaking; poor body is saying, warm me up!!!! I use 2 blankets alhamdulillah. I'm normally hot by nature. :-)
I make dua and thikr, I text, I talk to the nurse occasionally. It takes about 1.5 hours to do my exchange and because I know the importance of proper calcium levels and I know the warning signs it's low, I am constantly aware. Subhanallah how the mind works! So it's a constant battle to keep my level correct without over-compensating.
2 treatments ago I crashed. I normally do not have high blood pressure but as a side effect of the MASSIVE doses of steroids I've been on, I have developed it secondarily. For several days I kept a severe headache and my pressure would steadily climb to 200/98. Alhamdulillah. So they put me on a blood pressure medication and I also take a diuretic to help me pass more fluid and not be overloaded.
So I go to treatment. My damaged (and damaging!) antibodies (housed snugly in my plasma) are spun out from my whole blood; the bad plasma/antibody mixture is pulled out into a collection bag and bottles of pure albumin (human protein) and sodium bicarb solution are added back in, in supposedly even weights. However, that day somehow my balance was off and I had taken those 2 meds which also drop your pressure.
Sisters, if you've even had a hypotensive episode (esp on dialysis) you'll never forget it. You feel as if you cannot breath (because you physically do not have enough blood volume to transport oxygen). You begin to hyperventilate (your body's attempt to right the imbalance) and your heart rate soars. You get pale, sweaty and clammy. Often you cramp up and pass out. Pretty yeah?
That happened to me a few times when I was on dialysis so I am aware of the signs and symptoms. I get back to my room post treatment and ya'll, I cannot move. My pressures are uber-low and my heart feels like it's gonna burst outta my chest. I tell my nurse after about 30 minutes and she isn't impressed. (The one and only nurse I had, I might add, that I did not appreciate their standard of care.) So I'm lying there, cannot move, cannot speak almost, it's a chore to form the words and spare the breath. I tell her I am dry, hear my voice? (it's suddnely hoarse), see my heart rate and low bp, can I please have some fluids? It's common sometimes in dialysis to get a bolus of fluid at the end if you are too dry.
She reluctantly, and after about 30 min, hangs a small bag but alhamdulillah at a fast drip. By this point it's been 3 hours or so of extreme physical discomfort and yes, some fear. I cannot breath well, I feel weak and shaky, I know my chemistries are wrong. Ya'll, I know my body! So I ask for my labs to be drawn. She comes back, 45 min later, and said the docs said they think I'm fine. Hmm really. Cause my doctores know me, they know I'm not all Chicken Little and the sky is falling! So I lie there, 5 hours now, unable to move. I have to go to the restroom and cannot, sisters, for the life of me, ask for a bedpan.
Another nurse comes in (they all know I'm self-sufficient and a non-complainer) and I explain how I am feeling again and that I must use the restroom. I tell her I feel weak and shaky and my bp is low blah blah blah. She escorts me to the restroom with the instructions to pull the cord if I need help.
***Gets a bit graphic here, read at will***
I sit on the toilet, well fall is more appropriate. My head spinning and I cannot sit upright. I lean to the side against the wall, and my world starts to go black. I try to even my breathing, bend over, anything, but this relentless feeling of "oh my god I'm gonna do an Elvis and do something unsightly in the bathroom!" is overwhelming. I am about to vomit and void myself and I can do nothing. I know if I don't lie down I'm falling, passing out in the loo :-) and I grab the call cord as I go down to the floor.
Please understand I'm not over-dramatizing this. I know what's happening to me, my blood pressure has bottomed out and ya'll it's scary. You feel as if you cannot breath because you cannot get enough oxygen to sustain your consciousness. I'm on my hands and knees, sisters, in the TOILET, with my bare bottom in the air and I.don't.care. I'm gasping for breath, bathed in sweat, and the intense shame I will feel later is just a thing of no consequence.
Oh how I've laughed since but not at the time! 4 nurses appear and masha'Allah they close the door. They are asking me, can you move, did you fall? And all I can think is, of course I can't move, I can't breathe! With supreme effort and the help of Allah swt I am able to get to the bed, at the point of passing out. I have oxygen placed on me, my blood pressure is almost too low to read, and I'm just past caring. Alhamdulillah getting laid down and the extra oxygen helps but I'm just out. My poor sister comes in at this time and I cannot even acknowledge her. She was so scared. :-(
So long story slightly short :-) they draw my labs. All my chemistries are off, I have to have iv potassium and magnesium and I don't remember what else. My calcium was low, my blood pressure almost nonexistant and I endured one of the scariest and most suprememly embarassing moments of my life. Subhanallah.
Fast forward to my treatment 2 days ago. I know my body and I AM my own advocate. I refused the bp meds as well as the diuretic. I drank loads and loads of fluids before I went and I requested extra potassium as well. I had the same tingling during treatment (much worse at beginning and end) but kept my composure and didn't let my mind tell me, heyyyy you gonna be ass in the air again sister, watch out! :-) I conquered my fear through the mercy of Allah swt and through using the brain He gave me. Alhamdulillah.
I was still supremely tired afterwards. My pressure again was low but not ridiculous. Like 98/59 for a bit, low for me but I was aware. I drank as soon as I got back in the room and I didn't get up for 4 hours even though my pressures were better. I knew I had refused the medications that would have put me over the limit and my body could compensate for the rest.
When my docs came in I told them I had refused the meds that morning. One looked concerned and asked why? I pointed out my pressures (low end of normal) and the fact that I was actually able to semi-recline and speak at the same time as proof. He listened and he respected my judgement. Masha'Allah. It feels very good to be listened to when you know you have a valid point. He agreed I had done the right thing and I knew I had and my body was telling me, Yay job well done!!!! :-)
My pressures have stayed low-normal since so I know I made the right choice. I will do the same today, refuse the meds, drink up, and make dua and ask Allah swt for patience and strength. I get to go home today sisters and I am so grateful! I will be tired and I'm very immuno-suppressed right now so for a couple of weeks, I'm homebound. Alhamdulillah. I don't have the strength to do anything anyway. But I know with the help of Allah swt, which comes in many forms, including remembering to tie our camels ;-), I will be ok insha'Allah. I have a long road of recovery, my future is still uncertain. Has the rejection fully stopped? Will I regain function? Will I need dialysis or more plasmapheresis or an even more strenuous treatment?
Only time will tell. By next week insha'Allah I should have a game plan. But for now, it's one day at a time, one treatment at at time, one smile, one book with Aaminah, one cuppa tea with friends.
And I'm more than ok with that. :-) Ma salaama ya'll...
PS. I often re-read my post before putting it out there and please don't think I'm just whining. I think it's important for others to be aware of what can happen and to make informed decisions. To be part of their health care solution. I just hate that the whole post seems to be "poor me" and boo hoo hoo. Eh, you'll get over it. :D
PSS. And yeah, Cap'n and I have shared a hearty laugh over my "bottoms up" predicament. Subhanallah. What a mixture of hilarity and shame. :-)) I'm the hospital hijabi, no one enters my room, docs included, without knocking first. So for ME to be in such a compromised state... wellll let's just say I'm sure it added to the story. :-))
