My HSCT Success

 

HOW IT ALL BEGAN......

July 2010

Life for me is great. I’m happy, healthy and loving my life. Work can be a little stressful at times, but nothing too bad.

Out of nowhere in July of 2010 I was writing at my desk at work and I realized I wasn’t able to see the point of my pen on my paper. It seemed a bit odd and so I looked up across the floor at my co-worker and I couldn’t see half of her face! What!? Let me tell you, I went into panic mode for a little while! This lasted about 15-20 minutes. I know my co-workers were a bit concerned since I probably turned about 3 shades of red and started to cry. My Dad had Macular Degeneration and that was the first thing I thought.  I called my eye doctor and he squeezed me in for an emergency exam. I called my sister to take me as I wasn’t in any shape to drive or if I had another episode, I didn’t want to be driving. My eye doctor did a good exam saying everything looked okay to him. I then went to my Primary Care Physician, and we decided to not do anything more at that time but if I were to experience another episode we would explore further avenues. As I thought back to earlier dates I had had 3 other issues of what is called ocular migraines at various times of my life, starting in the year 2000. I never had headaches with them or after them, just the pretty, shiny, crescent shapes in my peripheral vision.  

In early October I started to get tingling and numbness in the smallest 2 fingers of each hand. Then weakness in both forearms started and I was having trouble turning things (keys, doorknobs, etc.) and writing so I thought I would go to my chiropractor. I thought if I had my neck and upper back adjusted, it might be relieved. This was of no help. But he tested my strength and a few other things and didn’t believe the issue was spine-related. He was the first to mention a neurologist.

My legs suddenly started becoming noticeably weak and feel like they were going to buckle out from under me. I began to feel if I wasn’t careful, I could easily fall. I called my PCP to order some blood work to be done and we found out I was vitamin B12 and D deficient. I started Vitamin B12 shots right away, got a Vitamin B12 sublingual to take also and vitamin D3 pills. I still was getting weaker and fatigued quickly. I then called to try to get in to a neurologist. My PCP suggested a doctor but he had no appointments available until mid-December and I felt I needed to see someone much sooner than that. I was able to get an appointment with another local neurologist. He had me do several tests over the next week. Doctor did an upper body nerve conduction test that really surprised him and then had me come back for a lower body test that wasn’t as bad as the upper body. He then wrote scripts for a brain (with contrast) MRI (to see if it was M.S.), EKG, heart monitor for 24 hours, and an ultrasound of carotid artery. Then insurance said "NO" to the spine MRIs. Waited about week and a half to have doctor try to talk them into it but they still determined that it was "not medically necessary". By then I was continuing to deteriorate so bad that I could hardly function at work or feel comfortable to drive and I was getting so weak I could do hardly anything without help. I was getting twitches and tremors all over my body and some intense jabs in muscles like a stabbing pain. Also, my husband noticed I wasn’t able to recall things as easily as usual and speaking was both difficult to come up with right words and also to speak them. I noticed a ‘mushy’ feeling in my brain (just not clear). I scheduled an appointment for a second opinion but couldn’t get anything until Dec 13th and still getting weaker. On Nov 30th my fingers (index and middle) on my right hand froze and crossed several times as did my middle and ring fingers on my left hand, the same thing. The next morning I could hardly lift my arms to wash my hair they felt so weak and heavy. That day at work (my last day) I could hardly do anything without just being so exhausted. At that point I went to my PCP and that is when we thought I better get into the hospital to get the tests I needed to figure this all out.

I got admitted to hospital and they started poking, prodding and keeping bodily fluids to test, examine and grow things from. Nothing, nothing, nothing...regular doctor was going to send me home on Saturday but neurologist wanted to try one other test, a spinal tap but I had to wait until Monday to do it. That was done and I went home to wait. On Tuesday I got the call that elevated levels of protein were found in my spinal fluid and that he wanted me to see another neurologist in St Petersburg.

The local neurologist was able to get me in to see him on Friday, Dec 10th. When we went down there I had to have another nerve conduction test (ouch ouch) and then I saw the doctor. He told me I have CIDP. “CIDP” I had no idea what that was. 

 

 

 

So, doctor immediately started me on 20mg/daily of prednisone (steroid) and requested approval for IVIg. I started the IVIg Jan 10, 2011 and get them every 3 wks. We started weaning me off the steroids in Jan and I was off them by March 30th. Still receiving the IVIg every 3 weeks but in July I wasn’t finding it being as beneficial as previously. By mid-July I was about as weak as I had been in December, so my neuro put me back on steroids again, 10mg/day. Still was extremely weak and only recovering about half as good for only about 7 days between treatments. The middle treatment in July of IVIg was like having nothing done at all. At this point, using a walker due to the weakness was necessary and self-care is minimal. Not cooking or cleaning much at all; and showering is a major challenge. When I fell in the shower and broke a few tiles, we had to replace the shower stall area and added hand holds and now I use a shower chair. It is still very difficult to wash myself but I do the best I can since I really don’t want to lose that bit of independence. This made me wonder if the IVIg was doing much at all. But, you can tell the difference when time goes by that it is time for it again. I just don't seem to be able to do one without the other. So last treatment in July we upped the prednisone to 15mg/day and see where to go from there. At about mid-treatment time strength is low and stamina for anything much is poor. Heat/sun do me in, if I have errands to run I am whipped quickly.

 

 

During the first few months after I was diagnosed, Eddie (my hubby) did a lot of research on the internet about CIDP and found a web site called GBS/CIDP Foundation International. I got on it and went to the forum to talk to others that had this same disease. I found a gal named Alice who had a (hematopioetic) stem cell transplant (HSCT).  I haven't mentioned this before but my first husband had a bone marrow transplant (for leukemia) that didn't turn out too well. I watched him suffer so long and hard through that battle, but the thing I remember most is saying to myself "If anything ever happens to me that I need this kind of treatment, I will NEVER do that!” From the time I read about Alice and read her account of the stem cell transplant (you can see it at http://www.alicedicroce.com ) it was as if God said to me “open your eyes and heart to this Wendy, this is for you”. I sat on this information for a while and chewed on it. I kept it in the back of my mind as an option. I was so frustrated in feeling better, then worse; fatigued then a bit of energy; dizzy or not; shaky, weak, tingles, more weak. I thought "I do not want to do this the rest of my life!" A pivotal moment for me was one day while receiving my IVIg, an older woman was there to get hers for the same condition, she was diagnosed at about the same age I was. She sat there in her wheel chair unable to do almost anything for herself. That day she said to the nurse that she was so pleased with the results from her last treatment that she could hold her cell phone and put on her own lipstick. I looked at my sister who was with me for this treatment and mouthed “I don’t want to end up like that”. The more I kept thinking about the HSCT and reading about it, the more I realized this is something I was truly interested in. I spoke to Eddie about it occasionally and had him read a thing or two and pretty soon he was finding out more information on it than I was! We were praying about it and it was time to put those thoughts into action. I got the paperwork from Northwestern University Hospital and filled out all the information to send it back to them. I heard back shortly that they were interested in seeing me and there was nothing that would hold me back from the evaluation process and we booked a trip for me to go to Chicago!

 

 

The evaluation process itself is not too big of a deal. The first thing I have to get is the EMG/NCV test. For those of you who have never experienced this just think about getting tasered at your funny bone! Yeah, it’s pretty intense at times. Not all of it is horrible but it’s pretty uncomfortable. They put electrode receptors on you and then use a two pronged “shocker” device in another area and measure the distance and time it takes your nerves to respond to the shock. This is done on one’s arms, hands, legs and feet. The process takes quite a while, usually over an hour. This is usually done by a “fellow” and the neurologist (Dr. Allen, in my case) pops in once in a while. Sometimes, he takes over if the fellow is having any difficulties or if he just wants to look at something specific. The other part of this test is the Nerve Conduction Test uses a skinny needle put in to different parts of your muscles and then a reading is taken on your reaction when flexing those muscles. The doctor must do this portion of the test.

When this is over, it was down to Laboratory Services to have A LOT of blood drawn. Well, for me it meant 22 vials of it. Wow. I was hoping that they could get that many since I flew up yesterday and I just don’t get to drink as much water while traveling as I do at home. It went well and all came out just fine. 

 

 I got called in for my next appointment, I was extensively interviewed by another fellow first. What I had done to assist myself prior to the trip was to type out a page or two of my story and I carry with me a calendar of my doctor visits, IVIg treatments, medicine list and changes, etc. This really makes a difference in communicating due to the fact that neurological diseases such as mine and many others cause mental cognizance issues. I found it very difficult at times to come up with the right word at the right time especially when anxious or excited. Having this log of events all written out for them and me was very helpful. I was so excited to meet Dr. Burt and express my thankfulness to him for what he has done for others and for considering me for this process! He was and continued to be rather humble at any praise almost to the point of nonchalance. But, if you watch him speak on You Tube videos to his peers, you can see his excitement and know he is thrilled to have helped so many people. (Go to You Tube and type in his name, Richard K. Burt to see his many talks about the HSCT for auto-immune diseases.)  After my accolades to him, we got down to business. A lot more questions and me fumbling through my calendar and notes, for him to say “do you realize this can kill you?” “Yes”, I say seriously, “I am ready to take that chance.” 

I felt when this appointment was over; I really hadn’t been able to tell Dr. Burt all I wanted to say. When I got back to my brother’s house I typed up and sent an e mail to Dr. Burt getting everything out I wanted to express but was unable at the time. I just made a personal plea about how I wanted my life back.

 

 

On Friday, I have an appointment with Dr. Allen at 1:00pm. When my time comes to sit with Dr. Allen (the resident neurologist), we go over my calendar and story as well. A lot more questions and answers but he tells me he is not very impressed with my disease! Well, then he can have it! This puts a little damper on things, but the final say is up to Dr. Burt and I will just wait and see.

 

 

When I got back home from the evaluation process I figured it was wait time! Well, that's not how it turned out for me. I got back from Chicago on Monday, December 5th and on Tuesday, December 6th Paula called to tell me I was IN! By the way, in 2010 when I was diagnosed it was 2 days after my 55th birthday then I hear I am accepted into the HSCT program 2 days before my birthday! I believe that in 2012 ON my birthday, I will hear I beat CIDP!!

Now, we have United Healthcare for insurance and right in their paperwork we all get a copy of it states that they do pay for stem cell transplants for people as long as it isn't in "trial". Which, of course, the HSCT I am doing is a trial; so I anticipate a battle! Paula (Dr. Burt's nurse), is the one who sends off the insurance requests and she put in for mine Dec 7th or 8th and I figured a few weeks before I will hear anything.  I decided to call her on Dec 22nd just to see IF something came through yet. I left a message on her machine and she called me back to tell me "I have an early Christmas present for you!” Wow! I was so surprised to hear she had an answer already let alone a positive one!!  I spoke to Paula again the following week to set my date! 

Now, the next thing we were concerned about was the hotel and air fare costs. I got on the phone with my insurance representative on Thursday, January 5th about whether or not they have a program of this type. He didn't know, but said he would check with another lady there and get back to me. Friday, the very next day, I walked out for the mail and in the mail box was a letter to me stating that there is a rider with the insurance company will cover the travel and lodging! 

 

Treatment program starts, March 2012

 

 

Well, I've been here two weeks now and have gone through all the tests, so I will catch you up on everything...fasten your seat belts!

Last I left you I was going to have a 2D Full Doppler Echo and the Pulmonary Function Test. They went on fine, pulmonary test especially good; I figured due to 22 years of teaching aerobics, even though I often get winded and out of breath easily now. Short spurts-I'm fine, but no long distance stuff for now.

When I went to see Dr. Burt and Paula, they let me know a few things showed up from other tests that need further investigation. In my blood work it showed high counts for Hepatitis B and also a CEA number was a tad elevated. So, back for another few vials of blood. The CEA count is a cancer marker, the range is from ?-3.0 and my number was 3.2. Well, they MUST check these things out. So, I had to have a scan for the abdomen and pelvic area, with contrast. It's a very quick procedure but it requires an IV! Oh goodie, another stick!! Also, I needed to drink a barium beverage, yummy! Not so bad, really. Banana flavor, kinda (just kinda) like a milkshake. Results are that I have 2 small cysts on my left ovary. They were not trouble of any kind, but they have to make sure it wasn't more than cysts; it's good that they are so thorough! When I got home, I had to rush to the bathroom and couldn't imagine why I was now having THIS trouble (I hadn't eaten for well over 12 hours). After a few rounds in there, I called the nurse and asked if this was normal, and discovered that some folks have this happen from the barium! I sure wish they would have told me ahead of time!

As far as the Hepatitis B is concerned, the blood work came back negative for that also. What happens to cause that is from the IVIg that I get to keep the CIDP symptoms at bay. As I have stated before IVIg is blood products from about 1000 other people that go through a cleansing process to remove any problems like Hepatitis, so the process kills any Hepatitis virus but the antibodies are still present in the blood which goes in to me. Therefore, the antibodies were showing up in my blood, but the results from the blood test was negative for the virus being present; so, no worries there either! Praise God!

While this was all going on, off and on for about 3 weeks, I have been having a little achy tooth trouble from a crown I had done in February. There is a dental office here that is used for folks going through the HSCT if we haven't been signed off by our own dentists. I was signed off from my dentist in Florida, but this ache just wasn't leaving me. I made an appointment to see the dentist here to have it checked out. I would be really upset if going through the HSCT and then having an infection in a tooth would be my demise! I only had to have it shaved down a bit and it feels fantastic now! Now, I am set to rock and roll and get started on the REAL process. I go in Monday morning to get my first round of chemo.

Chemo mobilization starts today (Monday, April 2nd)! Bright and early, after not sleeping too well (excited to get started) I walked to the hospital and was admitted to my room by 8:00am! IV put in, blood taken out for labs, fluids started and Mesna to protect the bladder and kidneys from the chemo started. Then my sister arrived! So nice to see a familiar face! Every one of the nurses and staff are wonderful but they can't take the place of family! Lasix started too, so up and into the bathroom quite often. 

When I went to sleep, they come to check your vitals in the middle of the night, of course. My blood pressure was only 80/44; just a tad low wouldn't you say? So they increased my fluid intake and decreased the Lasix. It came up okay through to the morning. Well, I happened to mention to Amy (another one of Dr. Burt's great nurses) that when I receive a lot of fluids, even with my IVIg infusions, I get a "heavy" feeling in my chest and upper back. I was feeling this way at this time because there were A LOT of fluids going in. She told Dr. Burt about this and guess what?! I have to have a chemically induced stress test. Sigh! We go back to the apartment for the night and I wake up at 2:00am to go to the bathroom. I am so dizzy I can hardly stay upright! I try sitting up for a while and thankfully Ruth Ann woke up to give me moral support. I finally did fall back to sleep and woke about 6:30am still dizzy. I called Amy and she told me to take a Zofran which is for nausea but it might help. Finally, by about 10:30am my dizziness subsided.

I had an appointment with the cardiologist at 12:45 where I just answered questions and they (he and a fellow) listened to my lungs and heart. They also looked at my previous EKG and Doppler scan, which looked just fine. However, I still had to have the stress test at 3:45pm. I couldn't eat anything for 5 hours before the test so Ruth Ann and I just hung out at the hospital (she had ice cream!) since there was no use going out to do anything.

I got in about 4:00pm for the start of the test, another IV! Oh, joy! Lay down on the bed while some stuff is going in my veins to increase my heart rate, squeeze a rubber ball and move my legs as I can to raise my heart rate. Then another person is taking pictures of my heart while this is going on. I guess it wasn't going up fast enough, so the tech put in another medication to give me a boost which apparently really worked, because I went into tachycardia! She immediately stopped the test but the other tech was able to keep taking pictures while I was having this reaction; it lasted for over a minute!   Whew, glad that was over, it is the weirdest feeling and very uncomfortable. I got calmed down and my heart rate lowered but then got the shivers and they covered me with warm blankets; that felt better. It was now about 5:30pm and I was ready to get out of there and get some food!

Thursday lasted about 3 days, I think. It just went on and on...I had to go back to the hospital for labs again, but this time it was a fasting lab since they wanted to check my cholesterol and triglycerides. Ruth Ann and I were going to go do a little shopping at a thrift store we found on the internet that was nearby, but I got about 2 blocks away from the hospital and knew I just couldn't do it! So we turned and walked back to the hotel for a nap and then some lunch.  Ruth Ann was having some blood pressure issues of her own for a little while and she was dizzy too (we like to do things together!). After lunch, we did walk to a GNC for some fish oil tablets for her and they seemed to help, thankfully! In the meantime, Paula called with my lab results; cholesterol and triglycerides were not as bad as I thought they might be! Dr. Burt looked at the results of the stress test but wanted to confer with the cardiologist before deciding what to say and the cardiologist needed to look at the results himself before talking to Dr. Burt. I didn't hear anything by end of day Thursday one way or another.  We had another nap after that walk and then some dinner. No wonder that day seemed so long...

Friday came and went with no news from Dr. Burt's office, so we are going forward with the "no news is good news" motto! Saturday I started the Neupogen shots, which will increase my blood growth in the marrow for the harvest this coming Thursday. Also, two antibiotics started at this time.

 Results came on Monday from the cardiologist (Dr. Shah) and Dr. Burt. Dr. Shah did not like the looks of my stress test in the fact that the tachycardia lasted for 1 minute 11 seconds after they stopped the test. So that means I have to have a cardiac catheterization. Don't know when that is going to happen at this point. Bummer! The thing is, though, if there is something wrong with my heart and I need a stent; this is the best time to find out and fix it. If I was to go through the Cytoxan (chemo) and it overstresses my heart, it could really be bad. Better to be safe than sorry. As I have said before, they are nothing but thorough!

On Tuesday, we went to the blood center for my IVIg. I get to sit in a recliner for 5 hours for this and it is only a half dose. I am to come back the next day for my 2nd half. When I get done this and we get back to the apartment, I feel a bit warm and take my temperature. It is at 99.0. Now that might not sound too high but my normal temperature runs low; about 95-97 degrees. I'm thinking I'm getting a fever. When it hits 99.5 I call Paula. So, Paula and Dr. Burt call me back and say if it goes over 100 to go to the ER. Okay, okay I will. Tried the ice cubes on my head, window open by cool air and a tepid bath. No good, 100.5 and we head to the hospital at about 6pm. Well, let me tell you when you are neutropenic and you go to the ER, you get quick action! Sat for about 2 minutes and was called to be taken out of there. I got a lot of dirty looks from an almost full ER waiting room. Got to a safe, private, "clean" room and got an IV put in (by the way, if this happens to any of you following me; ask the nurse if she can put it in a vein that is not in the crook of your prominent arm). They pulled blood and my white blood count was 1.2, normal is over 10. My fever was 101 degrees. So I had to be admitted. Back up to the Prentice 16th floor! Only it took until 6am to get me there! At least Eddie knew at 1pm that I was being admitted and he could go home. I was given anti biotic after anti biotic, Tylenol, and any other meds I was supposed to take and some more for good measure, I'm sure! All monitored very closely and not without permission! So now it is Wednesday morning and Dr. Burt & Amy come by to see how I'm doing. I remind them I need my second batch of IVIg and Amy orders it for me about 10:30am. The rest of the day consists of waiting, being given more antibiotics, oh yeah and Nuepogen! 3:30pm still no IVIg, called nurse and she's been on the phone with pharmacy several times to see where it is also. They keep saying it's taking a long time mixing...4:30 still no IVIg; I call Paula, she usually is the go-to gal but she doesn't have pull with the pharmacy folks! In the meantime, I can feel my temperature starting to go up again and sure enough I'm back to 99.1, keep those antibiotics flowing. At 5:30 still no IVIg, nurse says they will bring it up as soon as it is done; they promise by 7pm! "7pm!" I say! Well, it finally got there about 6:45pm and she gave me the pre-meds of Tylenol and Benadryl and says she'll be back in half an hour to start it. I said, ah no, just start it now, at home I don't ever take the pre-meds and I don't have any trouble so just get it going!! The bottle they bring is smaller than the one they brought me when I got it the day before and it had a few more grams of IVIg in it than it was supposed to (42 instead of 39) but we ran it anyway and it was done in about 2 1/2 hours instead of 5. This is more like I was used to when i get it in Florida. Their laws here are different and they mix it with more solution (at least they did the other days I had it). So I wasn't going to complain about it!

When it was finished, I put in my earplugs and put on my eye mask (an absolute MUST for those of you behind me) and slept mostly through the night. I still had to wake for blood draws and vitals from time to time.

Thursday morning woke for another Neupogen shot, and then went off to get the lovely temporary port in the neck for my harvest. Oh, that was enjoyable - ah, not so much. But not painful, just very uncomfortable! Then back to the room; it was all done in about 2 hours. Dr. Burt & Amy stopped by and they discharged me to go get my cells harvested. I got rolled over to the Feinberg Blood center and was hooked up in no time. 4 hours later, 20.8 million stem cells were collected!!!! (One only needs 2 million for transplant.) The removal of the port was much better than getting it put in.

 When I go for the heart catheterization on Monday, this is what might happen. If they find nothing wrong, they pull the instrument out and we go forth as scheduled! If they should find a blockage, they will put in a stent and the HSCT treatment will be postponed for 30 days. I will have to pack up all my stuff and fly home and come back to restart where we left off. Of course, I hope there is nothing to find so I don't have the hassle of the packing, etc.

 

 Monday I had the heart catheterization! After getting all prepped for it, a young woman doctor (fellow-in other words, beginner!) came in to talk to me about the procedure and explained what was going to happen and then an elderly doctor (about 80, I kid you not) came in to see me too and go over everything again. No one said who was going to be doing the actual procedure, but I found out soon enough. For the procedure you go in this room with lots of funky looking machines that remind you of a good horror scientific movie scene! Well, maybe not that bad, but pretty intimidating, nonetheless. You lay on this skinny bed--slab might be a better definition, they even have to add arm holders on the sides so your arms just don't drape over the edge and wrap them to your sides and I even hooked my thumbs under my bottom so they wouldn't fall off the bed (not my thumbs, but my arms)! They cover you with (thankfully warm) blankets and remove your beautiful gown! I have already been shaved on both sides of groin in case they need to move from one side to the other to do the procedure (we were able to stick to the right side). Next both doctors come in and the fellow is the one going to do the procedure with the elder by her side, whispering all the while. She did a great job in my opinion and I'm sure she will be a very good cardiologist or whatever when she comes through all her schooling. The needle pinch and lidocaine that burns a bit going in I'm sure is better than not having it at all and it didn't hurt as much as when the port catheter that was put in my neck for the stem cell harvest – location, location, location must have something to do with that reaction. Ok, so then they poke open to place the line wire to go up to the heart. That doesn't feel too bad and I was able to watch it on the television. Once they got it to the heart the televisions and other machines moved around a lot so I didn't get to see as much. It felt a bit weird from time to time just moving around in there and when she pushed the dye in to color the blood to see the actual arteries I got a see a few of those shots, that looked really neat; like a tree with the roots going down in the ground. It took quite some time as I imagine there are a lot of places they have to check, so you lay there and lay there. In the end, though, all went well and the elder doctor says to me on his way out "Just stay away from stress tests!" That statement made me laugh! Later, the younger woman doctor reported to me that my heart looked beautiful and my arteries are ones they don't get to see very often there! Yippee!! Good report!

So, the next procedure was on Wednesday to have my PICC line put in which is where all the meds, chemo, blood draws will go in and come out of! Yea, no more needle sticks; I look like a pin cushion. 

 

The PICC line went in after having to try two different places (the 2nd one worked just fine; and what's one more poke in my arm anyway?). It bothered me most of all the things as it ends up right in the middle of your chest and feels funny. I lay on my left side to sleep mostly and really felt it, so I  had to adjust to that but some nights I could actually lay on my left side fairly well and not notice it.

Okay, we are up to admission day, Thursday. Early day, 7:30am I am to be at the hospital.

I got started with Rituximab which is an immune suppressant so it doesn't fight the stuff coming in. In the evening I got a dizzy spell for about a 1/2 hour and the call button was across the room (we've learned to put it where I am sitting) but I knew the nurse was coming soon to give me my evening meds, so I just patiently waiting rather than risk getting up and falling. When she came in, I got up carefully and went to the bathroom to get ready for bed and lay down and went to sleep. All was well after that. I get those episodes every once in a while (about twice a month at no particular time or reason; meds, time of the month, whatever) so I don't know if it's CIDP or just me.

Friday; getting Rabbit ATG, which is a T cell suppressant. Since I woke at 3am this morning, I was looking forward to the Benadryl nap, but the Rabbit "juice" likes to bubble up and there were lots of beeps to keep me awake and the nurse had to keep coming in to fix the line. Then when that was cleared up, about 6 times at least; the allergy doctors came in to check to see if I was still allergic to Penicillin. I was very young when diagnosed with that, and they say in about 10 years you can be over it and since it was probably over 40 years ago, the chances are good that I'm not anymore. Lots of pin pricks and jabs into skin (like the TB test) and that went on for about 2 hours, so needless to say, no nap for me today! Hopefully, good night’s sleep to come! The good news is there was no reaction to the test, so they will be able to give me the meds they want to when I may need them from the penicillin family. 

 

Today I receive Rabbit ATG, which is a T-cell suppressant. The T-cells are the ones that go after things that come in to your body that they don’t know or recognize and they fight them off. They would, therefore, fight off the Cyclophosphamide (chemo) that gets rid of the other cells we don’t want at this point. I get the Rabbit ATG for 3 days and then starting Saturday, April 21st I will get Cyclophosphamide for 4 days.

Another thing that happened today is that I was able to pull out clumps of hair. FINALLY! Ok, I am a little odd here in that I was very anxious to get to this point so I could shave my hair off! I actually am looking forward to embracing my baldness! I got so many scarves, caps, hats, pins, ribbons and bows to wear, I always teased that I was going to have the “best dressed head” on the floor! So, I went in to the bathroom with my little electric razor and started the shaving process! Everyone prior to me that I followed on their HSCT process did a little Mohawk when they shaved, so I had to try it myself.

 Today, Saturday, is the day I start the chemo (Cyclophosphamide) and lots of other drugs to keep away nausea, headaches, etc. The chemo is now in me and so is the Benadryl, so I'm getting sleepy again. I feel fine otherwise, but lots of folks say after day 3 of chemo the reactions start, so we will see.

 

 The next couple of days are rather quiet and uneventful (thankfully).  I think it’s around Monday or Tuesday when I start with the loose bowels and therefore sore bottom. My nurse, Sophia; bless her heart, had such compassion. She got me Tucs, Desitin (like for a baby’s diaper rash) and the very soft, moist wipes to clean myself. Let me tell you and forewarn those of you following, that chemo toots and bowel movements are the stinkiest you will ever experience. Fortunately, Linda Martin (previous HSCTer) told me to get a spray air freshener and keep it handy! That was a good piece of advice! 

 

I got some decent sleep, 9:30pm to bed; blood @ 2:00am, bathroom & back to sleep. I didn’t wake until 5am. Even with ear plugs and eye covering mask, it's hard to get a good night's sleep in a hospital! I woke up to being dizzy again, got help to go bathroom. They do an EKG before administering the Cyclophosphamide, and this morning's test was a very slow reading. It seems that the machine got switched to a half reading so it took longer and read weird. They had to do it over. I'm still dizzy & doc came in to see me.

Said to doc that dizzy comes & goes; I get it 1 or 2 x per month, sometimes it lasts couple min or an hour, but the last one was the worst which was after the mobilization dose of Cyclophosphamide (about 7 hours), so time will tell. Hopefully it will not last all day or long time. I feel bad because someone has to come and help me go to the bathroom every time so I don’t become a fall risk. That I appreciate but you really feel tethered. Better safe than sorry.

 Pretty useless day, healing day! That’s what I’m calling it. Praise God, no pain or nausea. I had a little burping so I got some Zophran. Still breathing heavy, so just did a lot of resting which is good. I got my Cyclophosphamide today and tomorrow I get a day off. Thursday I get my stem cells that were harvested and Friday I will get another dose of chemo (different kind though). Just one more! Yee haw! 

 Woke up with hunger pangs, as I didn’t eat a lot today (yesterday really) so I have some Ensure on the table and asked for a cup of ice to help. Feel better in the tummy and helped my headache too which could be because I was hungry or because I wear my eye mask around my head all night! Nothing like having something wrapped around your head all night, but if you don’t it’s hard to sleep. Now, little bendy straws present a problem with drinking the Ensure; when you drink from them, they want to drip little brown spots on your nice, clean gown and it looks like you’re lactating chocolate milk! Ha ha ha. Well, you know, we are in a women’s hospital with lots of babies, so…guys, I don’t know about you but we women have a good excuse!

 

I’m really tired today. When my housekeeping gal, Andrea, comes in we kid around a lot but not today. I think I barely got a wave to her. I’m thinking I’m beginning to get neutropenic and started with a bit of a fever, so I get to get another antibiotic.

 

 

Thursday, April 26th

STEMMIES GOING IN TODAY!! What an exciting day! It is a bit like Thanksgiving dinner, you work hard and long to get this most beautiful feast together, hours are spent prepping, baking pies, and peeling vegetables, cutting, chopping, slicing, and carving. You set a pretty table with your best china and your best silverware. You use the crystal glasses and put all the food in your special serving bowls with the really big spoons. The centerpiece of the table has to be perfect and appropriate for the event. Everyone’s been invited and you gather around the table for a good prayer of thanks, sit down to eat and.... it’s over in 20 minutes!

The first to come in of the transplant team is the man with my frozen batch of stem cells. He is quiet and professional. I tell him I have heard about him from others, that he is “the quiet one” and I am rewarded with a smile. He gets busy thawing out my cells (runs them under the hot water in the sink) and then the rest of the “team” comes in. My nurse to do the honors today is Eric. He starts setting up the equipment on the IV pole for the infusion to begin. Dr. Burt, Amy and Dr. Han join the crowd and the process begins! Amy stayed with me the whole time, but the others ran in and out after the cells finished running in to me; only took about 25 minutes. They have to monitor me pretty closely, taking vitals every 15 minutes. I did very well through it all and had no issues at all.

 

I was hungry after the transplant; even though I thought I would need a nap, I didn’t. I laid there for a while trying to fall asleep but that didn’t happen, so I said I’ll have some turkey and cheese on 1 leaf of lettuce (chuckle) and some chocolate ice cream and ginger ale for burps. And, by the way, the chemo gas is pew…strong and not just air; so you need to protect your panties folks!  Gonna go for a walk now…later.

 

Chemo nightmares!! Not a pleasant experience. I was told about the nightmares ahead of time but didn’t really think about them before they happened. The good part about them was I played the “hero” in my dreams! I had to save the world from a fire that came up from the pit of the earth. I actually “dug” myself into the middle of the fire to bring up dry earth to put it out. Yeah, me! In the next one, I saved another patient who checked himself out of the hospital, pulled out his PICC line and was driving away from the hospital. He was stopped by a cop and I came along to keep him from either being arrested or bleeding out! I got him back into the ER just in the nick of time!  There was a 3rd dream, but I don’t remember that one, but I’m sure I saved more lives! I’m so healthy with all my new stem cells in me that I can take on the world!! However, when I woke also had the shakes and diarrhea and a sore bottom to go along with it. Saving the world is hard work!

 

Friday, April 27th

I woke up this morning with a tummy ache, nothing major but just not feeling too good. Ate my breakfast, vanilla yogurt and a not much else. Had to take the usual bunch of pills (about 6 of them) and uh oh, here it comes! Caught the first little bit in my hands and fortunately my nurse, Stephanie, was in the room! She ran to the bathroom to get the pretty pink tub for me to up-chuck in! There went all my pills in round two! She ran back and forth with about 3 different tubs for me because when you up-chuck yogurt, the smell is enough to make you up-chuck more! She brought me a wet washcloth too to clean up several times between vomiting, bless her heart. She hustled so quick back and forth between me and the bathroom to throw out the vomit and wash out the tub and get me a clean one for the next round, it was amazing! She would have won a marathon! She did in my book!! I haven’t thrown up for many years, since my girlfriend Tanya and I had food poisoning. I don’t have to remind myself it isn’t pleasant. After that I was relieved to not have to take my pills again until a later time and I got some Zophran thru my PICC line and it was my friend from then on whenever I started to feel nauseous, I would get some. Today I was introduced, by recommendation of my nurse, to Ensure! What a good thing this was, I loved it and over lots of ice it is just delicious! Gives you a good amount of protein and helps you have more energy since you don’t feel much like eating at this point. It almost tastes like a treat; like pudding in liquid form. Delicious!

 

Sat early a.m. 28th

Friday I had chemo, did pretty well thru it but around 7pm I got dizzy again. Went to bed around 10pm and was still dizzy but when I woke at 1:30am I wasn’t dizzy anymore. Dr. Burt should be in to see me in the morning, hopefully he will be pleased and hopefully my numbers are going in the right direction. I don’t know what are in the plans for tomorrow with the meds; maybe just some antibiotics. So far; so good.  I had the most pleasant experience at this point.  As I lay in my bed I felt like I was being cradled in the arms of my Heavenly Father. If you can picture a set of hands cupped together with me lying in the middle; that is exactly where I felt I was. It was the most peaceful feeling I think I have ever known. Had a little snack (Ensure again and a rice cake), was able to have a private time in the bathroom, and fell peacefully back to sleep. 

 

Got woke up about 4am with news that my hematocrit count was at 7.7 so I had to have 2 units of blood and some potassium, the potassium part isn’t unusual for me. Got that right away, but it takes a while for the blood to come up from pharmacy. Once that got running, I started to feel a bit better, I was definitely feeling like a weak little puppy there for a while.

 Day +2 today, I am neutropenic now, counts are at .6 that means the numbers are going where they are supposed to.  And I feel good, I really am feeling good; I know it’s all in the good Lord’s hands.

My nurse, Alex, just brought in my blood results and I am officially neutropenic; “TLTC” Too Low To Count. That means being extra cautious, washing hands, keeping clean, have vitals every 4 hours instead of every 8 hrs. If I walk the halls, I have to wear gown, gloves and a mask. And visitors must be extra careful too. This is just as expected and numbers are where they should be at this point! I’m smiling!!

 

Tuesday, May 1st

Starting about 7pm last night, boy did I get a headache. It started just slightly but by 8pm it was much worse, so I went to sleep. Woke up about 9 and it was a little more; probably put it at a 7 out of 10 pain wise, so I called in the nurse and got some Zophran for my tummy, because that was a little iffy too. She called the doctor on call and he just wanted to give me some Tylenol, well I wanted to laugh; Tylenol doesn’t do anything for me, so I got some Norco and I slept pretty good, waking occasionally with the headache at about a level 4. All I have to say to those who do this behind me, is don't try to be superman; if it starts to hurt or you get nausea, ask for medicine! If it's bothering you, they have a pill for that! haha! Actually, it's much easier on you if you can stop the pain/nausea before it gets too bad than wait and have to fix it later and it takes more meds to help.

When I woke this morning about 4:30am to visit the bathroom, I just felt lighter like I had lost a lot of my body fluids. My feet and toes felt better and my stomach felt smaller too. I was retaining a lot of fluids and my feet and lower legs were really swollen. My poor little toes looked like sausage links. I don’t know if it helped, but I lay upside down on the bed with the head of the bed elevated so that my feet were elevated too! My mom and mother-in-law used to do this when they felt bloated in the legs/feet and I thought it might be worth a try! It seems to have worked pretty well!

 

 

Wednesday, May 2nd

Jackie came on at 8pm (actually still Tues the 1st), start of headache, and the question is; do we wait to see if it gets worse or do you nip it in the bud? We decided to stop it early and got the Zophran right away and the Norco for the headache. Went to sleep and 1:30am they came in to draw blood and we had good flow out of the PICC line tonight, Yay! I do have to sit up though for this to happen for some reason, it just works better for me that way, so I just do it. And then I usually go to the bathroom and get weighed and vitals done. I finally lost a lot of the water weight, about 10 pounds and feel so much better, so much less bloated! I had an Ensure since I still do not want to eat a lot of food. Stayed awake for a little while, watched some of the weather channel with this guy who took pictures in Puerto Rico; down in the caves and up in the mountains. It’s such a beautiful island.

 

Thursday, May 3rd

Overnight, I was awake, asleep, awake, asleep. Nothing bad happened, but did have some nausea and headache medicine before I went to bed. Wake up for blood draw, drink an Ensure. Wake for vitals early.  Needed platelets again today (#3) and those wonderful Neupogen shots to get the blood cells multiplying!  I’m at day +7 and I will keep getting the Neupogen shots until the numbers start to rise – so, rise numbers, rise!! Beautiful sunshine this morning, I slept through the sunrise but I imagine all will enjoy the warm sunshine today.

 While taking a shower and noticed a slight rash on my lower left abdomen. Hhhmmm, wonder what that’s about. I showed it to my nurse Carolyn, and she said we will keep an eye on it.By the time they came back to give me my  evening meds, the rash had spread farther across my tummy and was under my bandage at my PICC line (which concerns me most, of course) and up and down my right arm and hand. I noted that my knuckles were very dry and rough the last few days but thought it was from washing my hands so often and using the sanitizing stuff.  I did have to get platelets again, which you get Benadryl and Tylenol prior to that, and the rash is still spreading not getting any better! Tomorrow the dermatology team will come in to take a look at it.

Friday, May 4th 

Waiting for Team Burt to check on me and let me know how my numbers are doing!  Today is Day +8 and all is going well as expected. Dermatology came and examined my rash. No action taken at this point, we’ll just see how things go from here.

I had a bag of platelets and one unit of red blood cells as a boost, when you get them they usually raise your blood counts by one point and I was at .2 and it should put me over 1, which is why I may get to go home!

Saturday, May 5th

1:15 am, my nurse tonight is Joe and he just came in to draw blood.  I didn’t need any meds before bed tonight, Yay! No nausea or pain meds which have been the norm for me before; but I do have a little discomfort from the injection sites of the Neupogen, just not enough to worry about.  I got a bed that is different than most of the others here that I have heard about in that mine doesn’t “blow up and release”. I think it’s been a blessing though because the bed makes a lot of noise when this occurs. I just have to roll back and forth, right side, left side and a little on my back. I’m not much of a back sleeper because I don’t seem to be able to breathe as easily in that position. If I put the top of the bed up a little bit, that works okay.

Everything is going just wonderfully, I’m glad to say.  I had my middle of the night usual ritual of toilet time, Ensure, a little TV watching and then back to sleep. Awake again at 5:30am with just a little back pain in the lumbar area from Neupogen. I might do a Norco, perhaps. And I might get discharged today! 

 

By the time they came back to give me my  evening meds, the rash had spread farther across my tummy and was under my bandage at my PICC line (which concerns me most, of course) and up and down my right arm and hand. I noted that my knuckles were very dry and rough the last few days but thought it was from washing my hands so often and using the sanitizing stuff.  I did have to get platelets again, which you get Benadryl and Tylenol prior to that, and the rash is still spreading not getting any better! Tomorrow the dermatology team will come in to take a look at it.

Friday, May 4th 

Waiting for Team Burt to check on me and let me know how my numbers are doing!  Today is Day +8 and all is going well as expected. Dermatology came and examined my rash. No action taken at this point, we’ll just see how things go from here.

I had a bag of platelets and one unit of red blood cells as a boost, when you get them they usually raise your blood counts by one point and I was at .2 and it should put me over 1, which is why I may get to go home!

Saturday, May 5th

1:15 am, my nurse tonight is Joe and he just came in to draw blood.  I didn’t need any meds before bed tonight, Yay! No nausea or pain meds which have been the norm for me before; but I do have a little discomfort from the injection sites of the Neupogen, just not enough to worry about.  I got a bed that is different than most of the others here that I have heard about in that mine doesn’t “blow up and release”. I think it’s been a blessing though because the bed makes a lot of noise when this occurs. I just have to roll back and forth, right side, left side and a little on my back. I’m not much of a back sleeper because I don’t seem to be able to breathe as easily in that position. If I put the top of the bed up a little bit, that works okay.

Everything is going just wonderfully, I’m glad to say.  I had my middle of the night usual ritual of toilet time, Ensure, a little TV watching and then back to sleep. Awake again at 5:30am with just a little back pain in the lumbar area from Neupogen. I might do a Norco, perhaps. And I might get discharged today! 

 Yes, today is the day!! Blood count is up so I can leave!! The best part of the whole day was getting the PICC line removed! It's a long sucker...it went from my inner arm (just above my elbow joint) to the center of my chest.

 

Sunday, May 6th

I got up for breakfast, spent a little time on the computer; facebook and my e mail. I actually managed to stay up until after lunch, and then I took a 2 hour nap. At about 5:00pm I was able to remove my bandage off the PICC line incision and take a shower! Can l tell you how glorious that felt? I wasn’t tethered to an I.V. pole nor did l have to wrap my arm in saran wrap to keep the PICC line dry. The rash is still pretty prominent and tomorrow I go for blood work, so I will make sure they know it is still present. Other than that, I am feeling pretty good. I’m going to get dressed and maybe take a walk down the halls in this hotel!

Monday, May 7th

We went to Galter Pavilion this morning for my blood work; I don’t know when the results will be back from that. Took a cab today to and from everywhere, feeling pretty tired. We went to the Castle and the Elephant for lunch then went back to the apartment and I took a nap. When I woke up I was a bit hungry since I only had soup at lunch so I ate some leftover tuna and crackers. Ate dinner and went to bed early. Carol is still here and she is reading a lot and just relaxing herself. Being a business owner this has been a good break for her (so she says, she’s a good friend to come babysit me!).

Tuesday, May 8th

I still got the rash, using hydrocortisone ointment on it. They told me to stop taking the Diflucan, because it could be what is causing the rash. It has spread all across my torso and arms and it itchy as all get-out! Ointment is not really helping, neither is the prescribed anti-itch medicine!  They are going to have me up my prednisone to 60 mg for 3 days, 40 mg for 3 days, then 20 mg for 3 days, 10 mg for 1 day and back to my normal 7.5 mg to start the decreasing regime I am on. If this is the only bad thing that has come of this whole transplant process, it is so worth it. Other than that, I’m just still tired (of course) and weak. If I do a little something, I get so tired.

 

May 10th thru 19th

I think I was allergic to one of the meds they gave me before the transplant; it took about a week to 10 days to show up. It was the one that is a cousin to penicillin. They did that penicillin test to see if I was still allergic; but I had just had some Benadryl; so did that mask the penicillin test? That sure makes me wonder. They gave me some different cream, but it doesn't seem as effective as the cortisone. This, too, shall pass. Thankful for everything... BTW, I walked all the way from St Claire St to Walgreens to pick up the prescription, and then the rest of the way home with a couple of rest stops.

May 19th

On our way home today!! I have had a nasty allergic reaction rash to a medicine given to me. It went from mid-line of my body, down and upward. I went to a special transplant dermatologist team to try to get rid of it but it kind of has to run its course. They've given me things to deal with it, but nothing will make it go completely away. Through the whole process of the transplant, this has been the worst part. I certainly can't complain about that but I will tell you it is quite uncomfortable.  The worst part now is on my face and head, so I got a note from the doctor yesterday so I don't get kicked off the plane! I will be wearing a cap and mask, so most people won't really see the rash, but I don't want to take any chances. There is nothing "catchy" about what I have, but people can panic (understandably). So, we will be home tonight and happy to sleep in my own bed and sit on my own couch!

 

June 11th

I am noticing my eyes feel "filmy" and "blurry". Is that part of the transplant/chemo reaction? The blurry/fuzzy eye thing is concerning. I went to an ophthalmologist and had quite a few tests and it came down to dry eyes. Every other part of my body seems dry so why not my eyes too. I am to use moisture eye drops several times a day. I usually use eye drops first thing in the morning so it is not anything foreign to me and I will just do it more often. Everything else was looking good in my eyes, so that is a relief!

Some very good observations are that I am experiencing many less twitches, for sure. I keep count of how many I notice and it has been 6 since transplant! 6!!! That is so cool! No pokes, jabs or stabs at all!

June 30th

I am feeling so much better and better each week. Still have slight rash and still on prednisone 10mg due to that. I am anxious to see when I can reduce prednisone that the rash doesn't come back like it did before. I’m also walking more and more. Having more energy and napping less. It's only been 2 months since my transplant, so feel that's pretty good.

July 12th

Things are going really well for me! It's been 2 months and 1 week today since my transplant and I'm feeling GREAT!! Improvements are happening weekly if not daily! I am still on 10mg of prednisone until the rash is completely gone! It is no longer actively spreading or itching but I still can tell it is underlying just beneath the service. Last time I decreased the prednisone it returned quickly, so I will wait until rash is more subdued before I start to wean off it. However, that is the only negative part of my report.

I am moving so much better, faster and easier at this point, I'm amazed! Last week, I jogged a short distance two times; I've been riding my stationary bike and walking the block fairly often (when it's not too hot to walk). The other day, my sister and I were doing a floor treatment of laying pennies in her archway to seal down as a decorative accent, which entailed sitting on the floor Indian style and leaning over for a length of time which was uncomfortable; but I did pretty good, just a bit stiff after getting up. We were listening to oldies music and when a good tune came on we actually jitterbugged danced like we used to before my CIDP!!! I was so excited; I started jumping up and down, which made me more excited that I could do that!!

 

A few minor ups and downs thereafter, but now I am 8 plus years post and feel completely normal most all the time. Only exception is when I get sick, some small symptoms return. It's just weird but I know they will go away when I get better! 

I hope this encourages someone to take the opportunity to go for HSCT, it's very successful for most of us with CIDP. I do recommend going as soon as possible so there is less damage to heal from.