Wednesday, 5/21/2003 - Day +23
Kim got out of ICU today! We are so happy!
Yesterday was a busy day for Kim. She had dialysis, a kidney and liver biopsy, and a kidney and liver CT Scan. The biopsies went well. We just had one problem. Her kidney started to bleed after the procedure, so they had to place a catheter into Kim's bladder. She was not happy. As of tonight, it is still there. They placed a separate line as well to continuously flush her bladder to prevent infection and blood clots. We hope that they will take it out later tonight, as it is not very comfortable.
Today was pretty quiet. Lots of doctors to talk to. The liver biopsy is okay so far. It shows traces of the light chain disease, but other than that, it is normal. There are still several studies that they are doing on it, and we will know more tomorrow. The reason for the poor liver function is related to Kim's diminished heart function. Because her heart is not moving fluid through her body, there is significant pressure around her liver from the extra fluid. That tends to "cloud" the filter mechanisms, allowing toxins to build up in her body. It should improve in time.
On the kidney front...good news and bad news. Good news is that it looks like there is little chronic damage. There is a good chance that her kidneys will recover, as the damage to her kidney tubes was minimal. No more steroids! Bad news is that the doctors don't know what is causing the problem. There is definitely some disease in her kidneys and we won't know until late this week or early next week the full extent of what the disease is. The fear is that it could be amlyodosis or the light chain in some form in the kidneys. This will take some extensive testing to determine. In the meantime, we will remain positive about the long term possibility of recovery.
Overall, Kim is doing good given the events of the weekend and the ICU. Her poor legs are very bloated from the fluid retention, she still has lots of mouth sores, and a nagging cough. Today marks the third week that she has not eaten...just the IV nutrition. However, she is starting to drink some water...but...she threw that up today. So, we will continue to take it one day at a time. She is such a trooper through. Funny, she has become pretty bossy. I think that Dad and I are her slaves! One of us is constantly rubbing her back, or legs or feet. We don't mind. We are just very happy and thankful that Kim is starting to get her mental facilities back. I have so missed being able to talk to her and get kisses. Even though the kisses are somewhat icky, and the conversations aren't what they used to be, I cherish each word and each kiss that I can get out of her.
Dad has spoiled me big time this week. We have eaten like kings (and had a few martinis as well).
We miss everyone and appreciate each and every card, email and prayer. I just wish that I could respond individually to each one that we get! But time seems to get short between taking care of Kim and working. Until tomorrow, good night!
Darin R. Haines
Tuesday, 5/20/2003 - Day +21
Overall, today was a quiet day. Kim will be in the ICU for the next several days.
Kim slept much of the day. She had dialysis for 3 hours and it went well. Dad and I met with about 20 doctors today who were reviewing Kim's condition. Here are the results:
1. Kim's heart function has decreased. It is only pumping at 25% capacity. This is most likely a result of the stress from the high dose of chemo. The doctors feel that it will get better in time.
2. Kim's kidneys have not improved at all. Therefore, we will do a kidney biopsy tomorrow to try and determine what is going on. We need to find out if the problem is related to the light chain disease, or damage suffered as a result of the chemo and drugs. The doctors feel that we are looking at a minimum of 2 more weeks of dialysis.
3. Kim's liver function improved slightly, but not enough to get excited yet.
4. Sunday's episode is most likely a result of Kim's blood counts being low, and use of an experimental filter to help her liver. The filter requires a lot of blood to "prime" the filter. When the large volume of blood went into the machine, Kim's blood pressure dropped causing the problems.
Kim woke up late in the afternoon and Dad and I were able to talk to her and spend the evening with her before they kicked us out of the ICU. We can hardly wait to get her out of ICU. It really is hard to be in the area. Lots of rules (Dad and I were busted for eating a muffin in Kim's room yesterday) and it is very depressing because everyone on the floor is so sick.
We had a surprise visitor yesterday. My college roommate Greg showed up. He was so concerned about us that he left home around 1:00 on Sunday with the intention to drive out. He got tired by the time he hit Chicago. Once there, he got on a plane at Midway, flew to Minneapolis, rented a car and drove to Rochester. All of this to spend a few hours with us before he had to leave to get home for work on Tuesday. We really appreciated it. He is a great friend!
That's all for now.
Darin R. Haines
Sunday, 5/18/2003 - Day +19
As I look back at the past few days, I think that the only way to describe them is to use Charles Dickens words from A Tale Of Two Cities (at least I think that is where this comes from) "It was the best of times and it was the worst of times..."
The Best of Times... Sue (our sister-in-law) arrived Friday night and my Dad came yesterday. Kim was good on Friday and great yesterday and last night. Yesterday, she went for a walk, used the bathroom, drank some water, blood counts went up and she had dialysis. All looked good. She had dialysis with a special filter to help remove some toxins that her liver is not clearing. All in all, Saturday was the best day that we have had for weeks. Kim even slept for six hours straight last night. Sue was awesome...she even wore hospital issued garments to make Kimmy feel better.
The Worst of Times... When Dad and I got to the hospital this morning, Kim was sleeping and her blood counts had dropped. Her kidney and liver functions were worse, and she was very yellow in color because of the poor liver function. They started dialysis and within 10 minutes, Kim started sweating, and begged the doctors to stop the dialysis. She had a hard time breathing, her blood pressure dropped and she had chest pain. The doctors immediately started to give Kim some blood, and did an EKG, which indicated that Kim may have had a heart attack. They stopped dialysis and transferred Kim to the ICU. In between all of this, Sue had to leave to go to the airport. Once in the ICU, they did a ton of tests. The good news is, it looks like Kim did not have a heart attack. However, her kidneys and liver continue to not function properly. Kim will stay in the ICU tonight to be monitored. Hopefully tomorrow, we can get her out of the ICU and back to her old room. On Tuesday, it looks like we will have a kidney and liver biopsy done to try and determine the extent of the damage to the kidneys and liver.
As always, please, PLEASE keep the prayers coming for us. Each day continues to produce a new set of challenges. Kim and I want to get her better and come home as soon as we can.
Darin R. Haines
Friday, 5/16/2003 - Day +18
I am going to keep today's update short, as I am very tired from staying with Kim last night.
Jean and John stayed with Kim on Wednesday night, and all three had a good night. Kim was able to rest comfortably. Yesterday was a very good day for Kim. She was less confused and was able to carry on conversation. As I talked to her in the afternoon, it was apparent to me that she has "lost" the past two weeks. She does not remember much after the actual transplant. She was amazed to learn what day it was and all of the company that we have had. The doctors have still not been able to do the spinal tap, as Kim has too much fluid around her lungs. Yesterday, Kim's white blood count dropped a bit, but the doctors said not to worry, as that happens from time to time.
I stayed with Kim last night and it was not a very good night. Kim became confused again and was very restless. This morning she woke up confused. Instead of leaving her in bed, I made her get up and take a shower (the first in about a week, as the nurses have been giving her sponge baths). You can imagine how surprised the nurses where because I did not let them know and I got busted in the middle of giving Kim her shower. After the shower, Kim was better. Then, instead of putting her back in bed, I made her sit up in the chair. I put her glasses on, and she was amazed that she could see. Then, I put Gwen's favorite Burberry hat on Kimmy. She looked great. When Jean and John came, they were very surprised at how good Kim looked. This is now my new mind set...time to kick Kim in the butt. I want to keep her up more during the day and force her to think and use her mind. Her blood counts were ALL up today. In fact, the one nurse said that if it were not for Kim's confusion, kidney and liver function, that her blood counts are high enough for her to go home. They are trying the spinal tap later today.
That's all. As always, please keep the prayers coming...I do believe that they are working. If anything else significant happens today, we will post it. For now, it is time to get some sleep to be ready for tonight!
Darin R. Haines
Wednesday, 5/14/2003 - Day +16
Sorry for the delay in updates. I have been busy with Kim's condition and with trying to keep up with some things at work. Damn budget stuff.
Monday and Tuesday nights saw the same pattern. Kim has a hard time getting comfortable and resting peacefully. Jean and John stayed with Kim on Monday night along with a nurse's aid. No one was able to get much sleep. Last night was even worse. Mom kicked me out of the room around midnight so I could get some rest. By the time I left, we had to have a doctor paged and come in from home. Kim could not breath, she was shaking really bad and the dialysis was rough on her. They did all kinds of blood work, an EKG and a chest x-ray. Other than some fluid on her lungs, things were okay. Mom said Kim finally went to sleep around 1:00 and slept until 4:00.
As you will recall from a previous update, the doctors are concerned about Kim's confusion. They have done a battery of tests to see what is going on with Kim's brain function. An MRI, EEG and a CAT Scan. Thankfully, they are all negative, which leads the doctors to believe that the confusion is purely a result of Kim's poor liver and kidney function, which allows for toxins to accumulate in her body. As I write this update, Kim is having a spinal tap done to test the fluid in her spinal cord to make 100% sure that she has not had a stroke and that her brain activity is okay outside of the toxins. If this test comes back negative, everyone here seems confident that when we get Kim's liver and kidney functions back to normal, then the confusion will begin to go away. As a matter of fact, I think that she is better today. We have carried on a few conversations and I have received several hugs and kisses.
Kim's white blood count is up to 11.7 now, so the stem cells are still working. One of the newest problems is her body temperature. It has dropped a lot, and Kim is cold all of the time. She is also having a hard time breathing.
I talked to the doctors today and asked for one favor. When this is all done, I want to have a private session with the entire transplant team. They need to do a better job of preparing both the patient and caregiver for what they are about to go through. At this point, I would say that if you take my worst fears about the transplant, multiply them a billion times over...well, even then you would not get a good picture of what we are going through.
Please keep the prayers coming our way. My courageous, beautiful wife needs them!
Darin R. Haines
Monday, 5/12/2003 - Day +14
Mom stayed with Kim last night and it was a long night. Kim was restless all night and the hallucinating got worse. I don't think that Mom slept at all. Right now they are doing dialysis, and the only way Kim will rest is if I hold her hand. She keeps saying that she wants to go home. That makes two of us. I had the gut wrenching job of shaving Kim's head last night. She now looks like Demi Moore from GI Jane.
Now for the part of the update that everyone looks forward to...the good news, bad news.
Good news...Kim's white blood count went up to 5.9. Those stem cells are really working overtime now! Also, Dave was moved out of ICU down to the floor that Kim is on. So he is doing better!
Bad news...Kim's kidney function got worse. Her kidneys are working at 5% of capacity, therefore, she is one step removed from total kidney failure. The doctors think that some damage was done to her kidneys from one of the antibiotics that Kim was on. The other theory is that the light chain disease had progressed much more than we originally thought. The only way to know is to do a kidney biopsy. Problem is, we still can't do that as it is too risky. We need to have Kim's platelets get up to 50,000 before they will even attempt the procedure. Right now, the platelets are at 30,000. They still have not done the CAT scan on Kim's brain. That is scheduled for later today.
Again thanks to everyone who is sending us e-mails, cards and prayers. I wish that I could respond to each of you, but between caring for Kim and working, time is short. We miss everyone and look forward to getting home!
Darin R. Haines
Sunday, 5/11/2003 - Day +13 (day 17 in the hospital, and the beginning of week 5 here in Rochester)
Our company arrived yesterday. Mom flew into Minneapolis and I drove there to pick her up. Kim's Mom and John arrived late last night around 10:00. They had a long drive going through all of the bad weather across the mid-west. Mom and I stayed with Kim yesterday and Mom stayed with her last night. Kim's white blood count increased to .9 yesterday and rose to 1.8 today. The doctors are very happy with the progress, as it indicates that the transplant is working. Her other counts are doing good as well. However, on the down side, Kim had another round of dialysis yesterday, her kidney function still has not improved, and her confusion is still present. She tends to drift between consciousness and her own little world. She is getting mad at me because I make her take her medicine, I don't let her pull out her arm catheter, and I force her to go for walks.
The doctors spent a lot of time with us today. As I mentioned, they are pleased with the transplant and they feel that her heart is doing good. They are concerned about her kidney and the confusion. The doctor asked Kim a series of simple questions (what day is it, where are you at, etc.) and Kim didn't fair too well. As a result, they are going to do a CAT scan of her brain either this afternoon or in the morning to make sure that there is no swelling or bleeding around her brain. I will be happy when we get the result of the test to find out what is going on. They have backed off on many of her medications over the past few days to see if that helps with the confusion. Unfortunately, it did not help. They gave Kim a break on dialysis today, but my guess is that it will start up again tomorrow.
Yesterday, Kim's hair began to fall out. Since her hair follicles are dead, her hair just clumps together. Last night, Mom and I tried to comb out some of the clumps, but the result was much of her hair just fell out right in our hands. This morning lots more fell out, and we will be shaving her head later today. It is so surreal to me to see her going through this.
Our friends out here from Youngstown (Dave and Patti) were dealt a set back this week. As you recall from my Thursday update, Dave gave me a good pep talk early in the week, as I was a bit down. Unfortunately, after Dave gave me the pep talk, he suffered a stroke. He is in the ICU right now, but is doing better. I met his daughter and brother yesterday and will continue to check in on all of them. Patti's mom came out to help her. We were joking yesterday...just like I called for my mom to come out to help me, Patti, even at the age of 50, still needs her mom. I guess you never outgrow the love of a mother, or the comfort that a mother provides.
Have any of you ever seen the movie Forrest Gump? In the movie, Forrest and Lt. Dan are on a shrimp boat in the middle of a storm. Lt. Dan was up in the crows nest on the ship, yelling at God, asking Him if the brutal storm, and the set backs that Lt. Dan had in his life (he lost his legs in Vietnam) was the best that He could dish out. I must say that right now I feel like Kim and I are up in the crows nest with Lt. Dan, asking the same questions. Patti told me last night that God does not dish out more than a person can handle. If that is the case, Kim and I must be close to turning the corner, because I do wonder how much more can come our way.
Darin R. Haines
Friday, 5/9/2003 - Day +11
Gwen stayed with Kim last night and it was another rough one. Kim pulled out part of her new catheter which resulted in a small mess. Other than that, neither Kim or Gwen slept much. They started Kim on some steroids to help her kidneys out. Unfortunately, they have made Kim a bit grumpy. She yelled at Gwen and I thinking that we were conspiring against her to put her in a nursing home. It is actually funny. When Kim is better, I think that she will get a laugh out of some of the things that she has done or said. Should be a fun night tonight. According to Kim, her and I are going to a play at 7:00 and dinner at 5:00. Sounds like we are in New York City today. I forget where she thought we were yesterday. I guess that we have become jet setters!
Today her white blood count is up to .4. We are all excited, but the doctors want us to temper our excitement because the count is not yet high enough for them to say that the transplant has worked. Her other blood counts are okay, but she will most likely need another transfusion tomorrow. The dialysis did not improve her kidneys yet, but the doctors have told us that it is going to be a slow process to bring her kidneys back to normal. So it looks like we will have daily dialysis for awhile. Yesterday it was for 2 hours, today it is for 3 hours. Kim is retaining lots of fluid and she is bloated. The good news is that her heart is still doing okay and the fluid is not accumulating around her lungs like it did before. Once her kidneys decide to start working again, the fluid should gradually disappear.
Gwen and Sean leave tomorrow, and Kim's Mom (Jean) and step-dad (John) come out. As an added surprise, my Mom is flying back out tomorrow to stay as well. Given the events of this week, Mom decided that we could use her help in addition to Jean and John. I couldn't agree more.
Well that is all for today. Please keep the prayers and good thoughts coming our way, I know that they are helping!
Darin R. Haines
Thursday, 5/8/2003 (2nd update) - We just got done meeting with the transplant team. Kim's kidneys are not functioning properly. Therefore, we need to start dialysis. This will require another catheter placed in Kim. This one will run through her arm, up to her chest and into a major vein (in the same vein that her current catheter is in). Then we can start dialysis. She will now have three tubes sticking out of her body. The toxins are really building up and she is very confused. The doctors are not sure what is happening with the kidney function. Unfortunately, it is too risky to run tests on the kidneys because her blood counts are so low. Therefore, we have no choice but to treat with steroids and dialysis until the blood counts turn around and we can run some tests on the kidneys.
Thursday, 5/8/2003 (1st update) - Day +9
Darin here...sorry about the lack of an update yesterday, but it is hard to get everything done. The lack of sleep is beginning to catch up to me.
I relieved Gwen from her night duties to give her a break. Therefore, I stayed with Kim Tuesday night and last night.
Tuesday night was uneventful and Kim was able to sleep most all night. Yesterday, Kim's white blood count was up to .2, but the doctors said that anything between .1 and .3 is basically the same. Regardless of what they say, Kim and I look at it positively that the count went up from .1. Kim developed a rash all over her body from some of the medications. Her mouth is very sore and the doctors let me look at. How she is tolerating the pain, I don't know. There are so many sores in her mouth. Her kidney function deteriorated more on Wednesday. Kim slept most of the day from the pain medications and anti-nausea medicine. On a positive note, Kim has not thrown up since Monday. Other activities yesterday included me doing some work, Kim and I paid bills and we tried to make sense of all of the insurance paperwork that we have.
Last night (Wednesday), Kim did not sleep well at all. We were up most of the night. She was not sick, but just confused and did not really know where she was. I spent most of the night just trying to get her to rest. Today (Thursday) has seen her kidney function really deteriorate. To the point that we may need to start dialysis today to get rid of the toxins in Kim's blood as a result of her kidneys not functioning. The toxins have caused Kim to have lots of confusion so far today. From time to time, she does not know that we are at the hospital. As I type this, she is half asleep and thinks that she is playing with Buddy and Lainy (our nephew and niece). She also yelled at me for not getting the right food from the Schwans man (this is a normal occurrence when we are at home and provided some comic relief for me). The doctors said that the confusion will pass once we get her kidneys back in good working order. She is starting to retain more fluid (her weight is up 10 pounds over the past few days) and the rash now covers most of her upper body. Her white blood count is up to .3, so if it goes up again tomorrow, that means that the stem cells are beginning to work (we are keeping our fingers crossed!).
The doctors and nurses here continue to be great. I have become the "runner" for our day nurse and I help make Kim's bed, clean the room, get supplies, etc. It is fun. Hey Mom and Dad, don't retire yet, I may want to go to medical school as a result of my experiences out here!
I am beginning to think that there is some grand plan out there for Kim and I, and what we are going through is step 1 of the plan. I don't know what the plan is, but I have faith that it will be a good one, and change Kim and I forever. I had a long talk yesterday with our new friends from Youngstown about this. Even though Dave is going through the same procedure as Kim and is having some similar problems, him and his wife Patti continue to check in on us. They are both very positive people, and it is great to talk to them.
That's all for now.
Darin R. Haines
Tuesday, 5/6/2003 - Day +7
Last night was a rough night for Kim. She was up a large portion of the night sick. She still can't eat or drink anything. Gwen was a trooper and took good care of her. So far today, Kim has slept most of the day. The doctors now have her on continuous pain medication through her IV and she can still take an extra hit when she needs to. They started some new anti-nausea medication today (via IV) to help with the sickness. It has helped, but by no means has it stopped the negative effects of the chemo. She still has a fever around 102, which call for more medication.
Today, Kim's white blood count dropped lower to .1. That is about as low as it can go. Her platelets also dropped, so my guess is later tonight she will get another transfusion. As Kim and I talk about everything that is happening, we have decided that the doctors did a good job explaining things to us, but as with most things in life, things are never real until they actually happen to you. We are very anxious to get this period over with and have her stem cells start producing new white blood cells so Kim can feel better.
To say that watching Kim go through this tears my heart out is an understatement of gross proportions. However, at the same time, she is an inspiration to me that words can not describe. I know that when this is over, with all of the prayers and kind thoughts from all of you our support group, Kim and I will both be stronger in our faith and love for each other.
Darin R. Haines
Sunday, 5/4/2003 - Hi everyone...Darin here. Sorry for the lack of an update over the past few days, but it has been rough out here. Kim has been pretty sick, and I have been trying to wrap up a project for work. Good news...I got the project done for now, bad news, Kim is still sick.
The chemo has really taken effect. Her white blood count is down to .2 (I think that means 200 white blood cells) where the normal person is at 3.5 - 7.0 (which translates to 3,500 to 7,000 white blood cells). The count may go a little lower, but it will remain low like this until the engraftment takes place...somewhere around day +15 or +20 (we are currently at day +6). This is the period that we have been dreading. Kim is on IV nutrition because she can't eat or drink without throwing up. Her throat and mouth is painful because the chemo destroyed the cells lining this area. She has some pain medication in her IV that she can "take a hit" of when she needs to. Kim had a light fever last night so they gave her some antibiotics and it is up right now at 101.8, so they are monitoring that. The fever means that they need to hold off on her blood transfusion that was scheduled for today. Looks like Kim will remain in the hospital for some time yet.
Mom left on Saturday and we miss her a ton. Gwen (Kim's sister) and Sean (Gwen's husband) are here now. They have picked up where Mom left of by spoiling us.
We appreciate everyone's thoughts and prayers...please keep them coming!
Darin R. Haines
Friday, 5/2/2003 - HI, Kim here. It's been a tiring and busy day today. The stem-cell transplant went very well, but they are keeping me in the hospital for observation. They don't want fluid to build up in me again.. Today I have to get a blood transfusion. I have started on my low-phosphate, sodium diet, No organic (meaning has to be cooked) The tranfusion can be typical, as my white cell counts go down. I'm also beginning to notice some of the harsh side-effects. My Mom has not left my side since she got in Saturday. I also had another x-ray to use as a "benchmark indicator"
Kimberly Haines
Thursday, 5/1/2003 - Today was Day 2 on the calendar for Kim. She is still having some negative side effects from the chemo. Mainly throwing up. Mom and Kim had their nightly pajama party last night.
The doctors continue to be pleased with Kim's progress thus far. Her heart is doing good and her kidneys have stabilized. Her body is not retaining water like last week. We still don't know when they will transfer Kim to an out patient for the remainder of her treatment. It continues to be a day-to-day decision. However, they did let Mom and I take Kim back to the apartment this afternoon. But, as soon as we got to the apartment, the doctor called for Kim to go back for some special blood test. So Kim and Mom went back, and Mom got a parking ticket (good going Mom!). When Kim returned to the apartment, she was able to get a good nap in.
Well, until tomorrow, that is it. We miss everyone and appreciate all of the prayers coming our way from you!
Darin R. Haines
Wednesday, 4/30/2003 - Well, we are another day closer to recovery for Kim. The day went pretty good. The main concern from the doctors revolves around Kim's kidney function. It has gotten worse over the past two days, so they are watching it closely. Kim was sick much of the day from the chemo. It seems that since they gave Kim a dose that is normally given over two days (and the fact that they cut back on the IV fluids normally given with the dose, making it highly concentrated), the effects are occurring sooner than normal. Kim is very tired from the chemo and transplant. But I must say, she is a true inspiration. Her spirit is amazing and she continues to battle away.
The doctors are pleased with the way Kim has responded to the transplant at this point. And the good news is that her heart is doing good and her body is not retaining fluid. So as soon as we get her kidneys functioning properly, Kim will be able to return to the apartment. Mom is taking great care of us and has spent each night at the hospital with Kim so I can go back to the apartment to work/sleep at night. We miss you all very much.
Darin
Tuesday, 4/29/2003 - Today was the big day for Kim. The transplant process starting early this morning and was done by around 11:00. The process went well and the doctors are pleased with Kim's progress. The strange thing is the smell from the preservatives mixed with Kim's stem cells. For the next two days, Kim's room will smell like creamed corn. Kim slept most of the day due to some of the medications given to her and she got sick for a brief period of time. Other than that, things are good.
Today is called day "zero" by the medical staff here. It looks like Kim will be in the hospital through late this week and then we should be able to go back to the apartment. The main area that the doctors are monitoring is the amount of fluid that Kim's body retains. From today forward we will be monitoring blood counts to see when the engrafting process starts. Over the next week Kim's white blood count will continue to drop as a result of the chemo. It should bottom out mid-next week. At that point is when Kim will be vulnerable to infections. That period will last about a week, at which point the new stem cells will begin to produce red blood cells, white blood cells and platelets. Then her blood counts should start to increase and we will be on the road to recovery. Well that is all for now. We hope that everyone is doing well!
Darin
Monday, 4/28/2003 - Hi everyone, Kim here. We made it through the chemo treatment. The nurse brought in the bag of chemo and hooked it into one of my cath tubes and started the IV. It took one hour to empty into me. While it was going on Darin, Mom and I played cards. It was easy and very surreal at the same time. Nothing unusual or painful occurred. I have to cover the toilet after I go- to protect the nurses from the chemo. I guess it is quite toxic when it comes out. After the treatment, we ate lunch and met with a doctor. The doctor said I looked and sounded good, so he gave us a "pass" to go home. Right now, I'm at the apartment and feel pretty good.
I left my hospital room with a face mask on. I held my head high. I am allowed to take the mask off at the apartment and hospital room - anywhere else I have to wear it.
Tomorrow is our big day as it is the day of the transplant and called day 0. Then we start counting up. I may be released on day 20 or after, depends on how I do. Then on day 100 (July?) I have to come back to the Mayo for a check-up. The plan is to get regular check-ups with my docs at the Cleveland Clinic and the big 100 day is at the Mayo.
The people out here are so friendly and have an accent- kind of Scandanavian sounding. When people learn we're from Cleveland, they always comment on the Rock-N-Roll Hall of fame.
I am excited to have my mother-in-law as my sleep-over guest tonight. I bet I'll sleep better. Which, by the way, is difficult to get more than 4 hours of sleep due to the constant interruptions. Last night, I had blood drawn at 4:00 a.m., a visit from a nurse at 6:30, another nurse at 7:30 and my breakfast at 8:00 a.m.! As you can see, it's very busy at nights. Take care
Kimberly Haines
Sunday, 4/27/2003 - Hi everyone, Kim here. I am so happy because I am at our apartment in Rochester right now! I was given a "pass" to come home. I am still a patient in the hospital, I'm at Methodist hospital at the Mayo. I was transported by ambulance - I refused to get in the stretcher and sat in the back seat chair instead. I have a private room again on the transplant floor. My room number is 9-416 and a phone number is 507-255-5567. I have lost all the extra fluid that had built up in me and feel much, much better. The plan is to start chemo Monday with a single dose instead of 2 doses in 2 days. The reason is that fluids have to be given with chemo and the docs want to cut back on the amount of fluids I'm given. Then on Tuesday, I will have the stem cell transplant. It will be about an 8 hour process, but all done in the room I'm staying in. Darin and Mom will be with me for both the chemo and transplant. After the transplant, I will be monitored closely. Probably 7-10 days after chemo is when my white blood count goes down and when I'm at increased risk for infection. I will probably be hospitalized for at least another week, maybe longer. I was disappointed to be hospitalized, as it was my goal to stay out of the hospital. However, I'm realizing it's safer for me to be monitored 24 hours a day. And...they will continue to give me passes to leave the hospital as long as I feel well.
The hospital room is pretty spacious, bigger than my old dorm room. Has a large bathroom and shower. My view is of surrounding Mayo buildings - boring. I have a TV/VCR and can bring stuff from home to help comfort me. The really neat thing is that I have a leather bound menu to order my meals from each day. For lunch today, I ordered a pizza, fries and chicken sandwich. Darin and Mom helped me eat it. The food was remarkably yummy! Starting tomorrow, I will be on a non-organic diet, meaning that I cannot eat fresh veggies or fruit. I also have to stay on a low-sodium and fluid restriction diet as well. I can only have 2000mg of fluid each day - and that counts any IV's the docs give me. Needless to say, I am constantly thirsty and long for cups of cold water. I have been sucking on ice chips, but that even counts as fluid. I also cannot be around plants, flowers, babies (vaccinations), pets, construction sites and sick people. I will have to wear a mask when I leave my hospital room. I will be able to do that, as I see so many others who have to as well.
That's all for now - I am going to eat some fruit! Kimberly Haines
Saturday, 4/26/2003 - Kim here. The nice male nurse allowed me to use their computer room to check my e-mail. I am still in the hospital and have had 1.6 liters of fluid drained from my right and left thorax region. It was an extremely uncomfortable procedure! They numbed me first, stuck a small tube in my back and by looking at an ultrasound, started draining the fluid. When they got it all, It got painful and hard to breath. But, my lungs feel less congested now and am breathing much better. I have also lost 10 pounds. The docs also gave me more dieretics. It was scary to have this happen and am not happy at all about being in the hospital. Time goes by very slowly and I am longing to be outside and back to my apartment. Darin stayed with me in my hospital room last night. It was comforting to have him with me. As far as I know, I will be transferred to Methodist hospital, in the transplant unit, on Sunday and begin chemo on Monday. I will probably remain hospitalized for a while, as it's probably safer for me to be monitored 24 hours after getting the chemo and transplant. Darin is picking up his mom today from the airport. It will be great to have someone else with us.
I keep telling myself this is only temporary...but I'm having trouble dealing with it.
Kimberly Haines
Thursday, 4/24/2003 - Thursday was an interesting day. The day did not start until 11:30 (we got to sleep in) with some chest X-Rays, then some blood work, and then onto Dr. Franz, our cardiologist. Given the difficulty Kim was having breathing and the results of the chest X-Rays, Dr. Franz decided to admit Kim to the hospital. She has pretty significant fluid build up in her body. They are giving Kim potassium (since it was low) and IV diuretics to help with the fluid. Tomorrow (Friday) they are going to do a procedure where they drain the fluid off of one of her lungs, and then if it goes well, they will do the other lung on Saturday. Dr. Lacy, our main doctor out here, still wants to start Chemo on Sunday. That will be contingent on first getting rid of the fluid.
So here is the plan as it stand now:
1. Get rid of the fluid on Friday and Saturday.
2. Transfer Kim from the hospital she is currently in (Saint Marys) to the Eisenberg Hospital, where the Chemo and stem cell transplant will occur.
Given these latest developments, Kim will be in the hospital at least through the transplant, which will most likely be mid next week.
Mark and Suzy leave Friday morning, and then Momma Haines come on Saturday.
Darin Haines
Wednesday, 4/23/2003 - Hi, here's what's new: I'm done with my stem cell collection! Yea!! It took 3 days and around 8.2 million were collected. We were shooting for 10 , but my doc said we're done. Suzy came with me the last 2 days and kept me company. The days were long, tiring and boring. After each collection, I was extremely fatigued and could barely walk. It takes the entire night to gain some strength back. I still have been experiencing some fluid retention, but hope it slows down as I am not fitting into my clothes. Thursday is filled with more appointments and a visit with my transplant team. Then, if all goes well, I will get chemo on Sunday and Monday and my transplant on Tuesday. After that, I will have to change my diet, living habits and wear a mask until my immune system is not compromised anylonger. I am glad to have a few days to rest and prepare myself mentally for this phase.
Darin and Mark were able to golf today and yesterday. We even cooked some steaks on the grill.
Kimberly Haines
Monday, 4/21/2003 - Here's what's happening: GREAT NEWS!!! Today's harvest was bountiful at 3.1 - we are shooting for 10.0!
Today Darin and I went to "the beach" around 7:00 a.m. I was taken into a large room where the nurse hooked me up to the machine that would begin the process of harvesting of my stem cells. This would take about 5 hours. I passed the time by watching a little TV, coloring, talking to Darin and listening to some CD's. Darin even got some work done while we were there! The nurses were very kind and gentle. The side effects were tingling and numbness of the mouth and extreme fatigue. After the apheresis process I felt like I had just had an interview with a vampire. Ha! Ha! However, after the process and a fat free cookie I quickly regained my energy!
Here is an amazing story . . . The couple next to us were from Youngstown, Ohio, he has amyluodosis(very similar to light chain) and they have Cleveland Clinic doctors (like me) AND he has cardiac involvement (like me)!!! Crazy!!! We exchanged phone numbers and will likely get to know them well as he is in the same treatment cycle as I am.
We experienced two minor bumps involving blood in my urine and fluid retention. Want to hear something gross? When I touch my neck I can feel the catheter in it! However, Suzy feels that it is the best invention since sliced bread! Now I will never have to get poked for blood samples or for harvesting.
Been keeping busy by playing games and watching Reality TV with our friends -the reality show junkies!
Kimberly Haines
Sunday, 4/20/2003 - Hi Everyone: Here's what's happening. Mark and Suzy came into town Friday night. They have been such a blessing to us- they are making us laugh and cooking lots of yummies for us. They brought all kinds of goodies - from other friends too - thank you!
Friday was my surgery - it was much more complicated than I expected. They did not put me to sleep fully and was I awake and felt much of what they did to me. They put in the catheter in my right chest - under my collar bone. It is really big and makes it hard to sleep at night. I have to lay on my back to rest. It took me a long time to recover from the procedure, but was able to go back to the apartment Friday night. I have had some pain from it and am working hard at relaxation techniques. I've been having daily shots for stimulating stem cell growth and they have been working. It also causes pain in the bones, especially the back and hips for me. I have enough stem cells to start the harvesting - so tomorrow I start at 7:00 a.m. Darin will be able to go with me. I will have to lie flat on a bed for 5 or so hours while they draw out my blood from one of the catheters, put it through the machine where the stem cells are collected and sorted , and then the blood is put back into my body. I plan on crocheting, reading, maybe catching up on e-mail if I can manage it. Thanks for the prayers and thoughts.
Kimberly Haines
Thursday, 4/17/2003 - Hi everyone. I'm looking out our apartment window at the new blooms on the shrubs. They are beautiful! Today was busy again. We met with a kidney doctor, he was a great guy. My kidney function is pretty low right now, at 35%, normal range for a female my age is 70-120. But, the doc was very positive that this will reverse itself after my treatment. Yea, I like to hear that kind of positive talk! We had to meet with a psychologist as part of the pre-transplant testing. I passed everything, but we are waiting on Darin's results - he may have a compulsive disorder - just kidding, but funny if you know Darin. Tomorrow I have the surgery to put in the ash-split catheter. We met the surgeon, funny guy. He told us he usually does liver transplants and hopes he doesn't accidentally take mine. Darin gets to flush my catheter - he is unusually excited about it. And finally today, I got my first shot of Nuperine to stimulate stem cell production. It was actually 2 shots in the belly and it was painless. I also had to get another shot with a BIG needle in my ass - ouch!
Darin bought a new Wal-mart special set of cooking pans. His culinary abilities are being tested with the one pot and 2 forks we have here. He's doing great though.
Many of you have asked what you can do to help or if we need anything. Here are some ideas:
-prayers
-e-mails, just telling me what's going on in your life
-cards or letters
-newspaper clippings from local papers/ Plain Dealer
-stamps
-cookies (I'm not counting calories anymore!)
-anything you can think of, because we don't have much here!
Thanks and we'll let you know how the surgery goes tomorrow.
Kimberly Haines
Wednesday, 4/16/2003 - We had a busy Wednesday, as we met with the transplant nurse, had a kidney analysis test (which took 2 hours) and met with Dr. Lacy, the hematologist/oncologist in charge of my transplant. So far, my pre-transplant tests look good - I have no underlying infections or illnesses and my blood counts have been improving in some important areas. Dr. Lacy said that I look to be going into this strong. Thursday, I get my first Nuparine shot to stimulate my stem cells. I will probably get a shot each day until Monday. On Sunday evening, I am to call the Mayo to find out what my stem cell counts are, if they are high enough, then I begin the apheresis process on Monday morning. That means they will begin collecting my stem cells. My target collection is confirmed at 10 million, half which will be used for this transplant. The apheresis does take up to 5 hours each day - I will be hooked up to a centrifuge machine. The main concern right now is that I don't retain fluid because of my heart condition, I will be watched carefully. On Friday, I will be having a small surgery to place an ash-split catheter in my chest that will remain throughout the transplant process. They will be able to remove and reinfuse stem cells, as well as draw blood and give fluids and meds through it. I was reluctant to have it "installed", but know it will save me lots of pokes. Dr. Lacy told me to enjoy my fresh fruits and veggies now, becasue after the transplant, I will not be able to eat them. I will also need to stay away from flowers, plants, cats, construction sights and babies who have recently received live vaccinations (such as polio). I'm not sure how long that lasts. I will have to wear a mask, like you see the people in HongKong wearing to keep me from getting any illnesses. Yesterday, I met a robot named Lucy. She is utilized as a gopher in the kidney unit - she takes blood and other samples to and from the lab. If you get in her way, she says, "excuse me". All for now...
Kimberly Haines
Tuesday 4/15/2003 - Today was pretty easy, just had to go see a dentist to make sure I have no infections in my mouth or gums. No problems, so I'm ready to keep going! The Mayo Clinic is pretty classy. They have doormen, just like hotels, who get you taxis, open doors and assist in other ways.
The apartment is growing on me and am getting used to all the strange noises. Yesterday I needed to open a can of beans but didn't have a can opener. Luckily, I was able to use enough sign language to borrow one from our Chinese neighbor. The weather is still fabulous- 84 degrees today, but snow is on it's way.
For those who have asked, blood and platelets can't be sent to the Mayo via American Red Cross for me. They use their own private blood donation system. Thanks for asking anyway.
Tomorrow will be a busy day. Goodbye for now...
Kim
Monday 4/14/2003 - I started my "new job" today. Arrived at the Mayo at 8:00 and didn't leave until 3:30. It made for a long day. Lots and lots of tests. Everything from blood work, to full body x-rays, pulmonary tests and urine tests (oh joy, I get to do the 24 hour urine collection yet again). Darin and I were able to take a tour of the facility where my stem cells will be collected. Darin will be able to be with me through the whole process...the only down side is I need to have a special device placed in my neck area that will allow the collection process to happen. The doctors want to collect 10,000,000 stem cells! That is a lot!
Tomorrow is an easier day, just one appointment. Wednesday and Thursday will be longer days with more appointments and procedures. The stem cell collection will start next Monday.
Darin has the apartment all decked out for his work...cable modem for Internet access, installation of a wireless network so we can go anywhere in the apartment and be connected to the Internet and he purchased and installed a new printer.
Sunday, 4/13/2003 - This is Tom. Kim and Darin arrived safely after a brief Chicago adventure and have settled into their new accommodations. Although Kim was less than enthusiastic about the kitchen, overall the place has been rated as adequate. They have a pool, a weight room, and cable modem internet access to hold their attention and lure visitors. Kim has been feeling a bit homesick and is understandably anxious about the procedure, which begins this morning. She's entering with a positive frame of mind and is eager to move forward. Updates should be coming on a more regular basis from this point on.
INTERNET PROBLEMS:
I apologize for this site's downtime over the weekend. I'm serving this page off my company's web site and the company responsible for our internet service is riddled with incompetence. For the sake of simplicity, something keeps happening on their end that makes our various web sites invisible to the outside world. Internally, everything appears normal. Being that our web sites are not mission critical, this problem is not apparent to us and could potentially go unnoticed for weeks. If you find this site down in the future, please shoot Kim or Darin a message or make note of my email address ( tciolek@alphatrac.com ) and drop me a line. This would be greatly appreciated.
Monday, 4/7/2003 - Updated contact info:
Kim and Darin Haines
Woodridge Apartments #234
2804 2nd Street SW
Rochester, MN 55901
phone # (507)529-5770
Kim's e-mail address: pa_haines@lgca.org
Darin's e-mail: DHaines@clevegrowth.com
Sunday, 4/6/2003 - We will be leaving for Rochester, MN on Thursday, April 10th. Kim's treatment starts on Monday the 14th. We will post our new address as soon as we get it. They had to get a new place for some reason, so please disregard the previous address
Friday, 3/14/2003 - Kim's disease is called light chain deposition disease. It's a very rare form of cancer. It's similar to amyluodosis and multiple myeloma.
Thursday, 3/13/2003 - Kim and Darin have returned from the Mayo Clinic in Rochester. We are happy to be home. Kim is taking some time off of work to rest and "digest" all that has happened. We appreciate all the cards, calls and e-mails- please know that we read them all and find it all so very comforting. Makes us feel we are not alone.
Wednesday, 3/12/2003 - Travel day. Nothing to report. Weather in Denver will climb into the 70's the next couple of days.
Tuesday, 3/11/2003 - Today's update is courtesy of Tom and his newfound cockatiel. Talked to Kim last night and here is what she said.
Her light-chain diagnosis has been confirmed and she will have the stem cell treatment, although a date hasn't been set. The transplant team meets on Fridays for scheduling and she should know the exact date by no later than March 21. She suspects it'll be in the 2-6 week range from today. She also needs to get the final approval from her insurance. The treatment will unfortunately last 6-8 weeks. Don't quote me on this, but I do believe they'll get to stay in their new cozy, two-bedroom apartment furnished with luxuries such as plates and towels and not the hospital. She described it as being nice, new, and in a complex similar to my own in Denver. I know that's not particularly helpful to most of you. Sorry. I will post her address as soon as they figure it out in case anyone wants to send some love. Visitors are welcome, but under restriction. Her immune system will be weak, so don't go if you're sick. Also might be a good idea to schedule ahead. That's all for now...
Friday, 3/7/2003 - Today was a long day for Kim. She had blood and urine tests, EKG, echo cardiogram, fat pad aspiration and bone marrow biopsy. The doctors want to definitely rule out a disease called Amylodosis. The doctors and facilities are amazing out here. We never have to wait to see the doctors or wait long for the procedures. The nurses and doctors actually have personalities and don't treat us like a number.
The weather is COLD...thankfully we don't have to venture outside. Everything is connected via walkways. I actually pushed Kimmy in a wheelchair today...she had fun, but it was hard for me...too many ramps to go up.
We will be out here a day longer than expected. Kim will have some more tests on Monday morning and then we meet with some heart specialists. Tuesday afternoon we meet with Dr. Lacy and determine our course of action.
Well, it is time for dinner and martinis! Until next week, over and out.
Thursday, 3/6/2003 - Well, we made it through the first day at the Mayo Clinic. Overall, the meetings with Dr. Lacy went well. She gave us some positive information on the potential benefits of the stem cell transplant and what we should expect. She was able to answer all of our questions and did not give an "I don't know" like we were getting at the Cleveland Clinic. She told us that the stem cell transplant would take between 6 and 8 weeks and outlined what the follow-up schedule would look like. Starting tomorrow, Kim will undergo some additional testing to fully rule out a disease called Amylodosis. She unfortunately will have to undergo another bone marrow and fat pad aspiration test, in additional to the normal blood and urine tests. On Monday, we will be meeting with some cardiologists to evaluate the extent of which Kim's heart has been damaged and to ensure that she will tolerate the stem cell transplant okay. That's all for now. We will provide an update tomorrow night. Darin & Kim
I enjoyed our first post together, and look forward to many more.
- Darin
