Life after diabetes.

We went and saw the transplant specialist in Milwaukee today as a follow up from the kidney ultrasound Crystal had yesterday and to hopefully get some answers on this whole high blood pressure situation. truth be told (and in my opinion) if Crystal didn’t experience these high blood pressures she would probably not have the headaches she is experiencing (or at least they wouldn’t be SEVERE headaches) and if she didn’t have the headaches we wouldn’t find ourselves exhausted everyday because we were in the emergency room for "x" amount of hours the night before.

Lately Crystals been sleeping ALOT and when she does get up and do things well then (I think) her blood pressure rises and on comes the killer headache - she is on blood pressure medications, but they seem to have little effect, and when she goes to the emergency room they dope her up so good it deprives her of energy and then she once again sleeps for another 13-15 hours or so. The medications (even the ones at home) wear her down so much that they leave her with little to no energy. 

Okay so I woke crystal up at 7:00am this morning to go to the dentist and she was mad and grouchy about me making the appointment so early but she has already missed 2 appointments so I had to get her in there. The appointment was for 7:30am and they didn’t get it in until almost 8:00am then they did the whole ex-ray stuff and everything. They ended up filling 2 teeth that were very bad…so this should stop the mouth pain she has been experiencing. We were there at the dentist until about 11:00am

Around 12:45pm we were back on the highway heading to Milwaukee to see the transplant specialist as a follow up from the kidney ultrasound that Crystal had performed on her yesterday. We like the transplant doctor alot but he seems to think Crystal’s high blood pressure is due to stress and worry and goes onto think that the stress and worry also contribute to the killer headaches she gets. So in the end his diagnosis was "Labile Hypertension" (which we think is bullshit) and his recommendation was putting her on a mild anti-depressant but she declined as the pill promotes weight gain. The doctor then decided to keep her on the Labatelol but upped it to 300mg twice a day morning and night, he also recommended clonidine .05mg if the pressures are really high, and 1mg xanax as needed (the xanax do seem to help her).

All of this is great, but the combination of those drugs sometimes slams her pressure to low, or moved it to quickly that it basically knocks her out (energy wise) for sometimes half of a day. In the end I think we left with no better answers than we came with, and thats upsetting.

Crystal was with a friend tonight shopping and while out and about she started once again developing a headache, before they even got home she was throwing up in a shopping bag. When we checked her blood pressures so after she got home it was 143/104  so I gave her the regimen of blood pressure medications as well as the xanax. About an hour later her headache was still getting worse so once again it was back to the ER where we spent about another 4 hours.

Today was a Loooong day !!  We had just gotten home from the ER at 5am this morning and then we were only able to get 2 hours of sleep until we were back on the road for the hour drive to Milwaukee for two more doctors appointments.

The first Appointment was at 9:00am with an OBGYN that just had to do a routine thing to make sure all was well with Crystal (ob Wise) since she is now about 4 months post pregnancy. This appointment took just about an hour and I was able to see Crystals cervix on a tv monitor, this is NOT what I wanted to be seeing at 10:00am with just 2 hours of sleep and no breakfast.

FYI - If you have never seen a cervix magnified about 10x to the power, firstly you are not missing anything !!  Secondly if you must know it looks like a beehive.

We finished with the Obgyn Doctor about 10:15am, and Crystals next appoint in the same hospital for a kidney ultrasound wasn’t scheduled until 4pm. Its too long of a drive to go home for 3 hours just to drive an hour back so We planned to hang out at the hospital until her 4pm appointment (maybe find a place to sleep or something) but we did go and check the ultrasound department and explained the situation to them and they were nice enough to put her on a waiting list for an earlier time.

It worked out okay as she got in for the ultrasound around 12:30pm and we were home by 2:30pm.

On a sad note while I was waiting for Crystal this old lady came into the waiting area escorted by a nurse, the old lady was very distraught as she just seen her husband get put into restraints. I wasn’t sure of the whole story so I listened as the nurse comforted her. This sweet old lady was talking so dearly and fondly of her husband who she stated didn’t have a mean bone in his body. She spoke of their 7 children and 18 grandchildren and how her husband was in the best of shape walking 50miles a week still at his current age of 87.

I listened as she struggled to understand why her husband of 52 years that cooked and cleaned… her husband that ate the proper diet, walked 50 miles a week and swam as well… I listened as she spoke of their relationship with the lord. I sat there as she struggled with the idea that her husband was down the hall swearing like a sailor and physically fighting everyone in sight until they sedated him. She wondered long and hard and questioned why her "very healthy" god fearing husband had a stroke that morning while talking to the bank teller at the local credit union. She questioned why even now hours lated why he didn’t remember her, or even know where he was. It was an emotional experience.

I chimed in with caring words and told her a little about Crystal, the diabetes, transplant, and loosing her vision at 24 years old. I told her that sometimes there are no answers and things (health wise) can change overnight. I went on to tell her how lucky she was to have an amazing hospital and doctors so close by (she walked there from home) and I told her that we drive over an hour to see the doctors because they truly are the best - I just let her know that there is no better place that her husband could be at for amazing care and that really seemed to help her cope.

It was really a heartbreaking experience as they had many many good years together and I suppose him having any kind of health issues especially a stroke was probably the furthest thing from her mind for a long time. Its amazing how reality slaps you in the face - after all virtually no one can believe how much Crystal has been through at her young age, and yet she still stays strong. Tonight I will definitely pray for that lady and her husband. 

Crystal has her dentist appointment tomorrow morning, and then we have to be back in Milwaukee at 1:00pm for her transplant specialist appointment. He will be checking her blood work (labs) and probably be giving her an EPO shot. We are curious if he can find an explination as to why  the blood pressures are so erratic. Hopefully soon we we be out of this seemingly danger zone and life may get a bit easier.

Today Crystal was feeling a bit weak and tired, again the problem seems to be these damn blood pressures. We had tried to call the doctors (P.A.) twice last week (we had her paged) but she never called back. Crystal is taking the 400MG of Lebetalol in the evening and for the most part that works but it seems as if it is taking hours to be effective.

Aside from the whole health/ blood pressure / hyper-tension / issues Crystal also has been having a really bad tooth ache. We had made 2 dental appointments for her to get her tooth fixed - as it is REALLY killing her but each time we make an appointment we seem to miss it for some reason or another, typically because we have just been exhausted due to the multiple E.R. visits and the Holidays. Today we had missed yet another dentist appointment because (and I know it sounds stupid) we over slept and the alarm did not wake us up. I did call and reschedule the dental appointment for Wednesday of the week.

This evening about 11pm we ended up back in the E.R. again (we are like on a name to name basis with the receptionist and doctors now) Typically we would find ourselves in the ER for the headache and high blood pressures… but tonight it was due to Crystals severe tooth ache. She is out of the prescribed Lidocaine that she had been drowning her tooth in for the last several days,and her tooth hurts so much that Orajel is completely ineffective.

So Tonight we "really" went to the E.R. to get some pain medication as Crystal said her tooth was throbbing, although we couldn’t tell them the real reason or else they wouldn’t do anything in our E.R. so we just said the usual symptoms so she could get her 3mg of dilaudid which was a sure way to stop the pain.

The E.R. was super busy tonight, we had to wait to be seen for about an hour before she could even get triaged. During the wait we seen the police bring in an inmate (full shackles) to get a forcible blood draw which pretty much means he was arrested for a D.W.I. charge. Then there was a lady in the waiting room that came over and talked to us… She seemed like a nice enough lady but she had a full suitcase with her as if she was going on vacation.

 I made the mistake of saying something silly like "are you spending the night" and the conversation ensued. We listened to her tale of how she feels her boyfriend is trying to poison her and she brought in all of her make-up and such to be tested. She stated every time he cooked for her or brought her coffee she would foam at the mouth. She went onto say that he was videotaping her whole house and Microsoft advised her to call the FBI, and that all of her Cellular minutes were being used up because he hired a company to "TAP" her cellular phone and every time she made a call it would charge her "double" because her phone was making 2 calls, one for the "tap" company (using minutes) and one call to who ever she was calling (using minutes as well).

This conversation with that crack head went on for well over 30 minutes until the nurse finally called us as they had a room available, Thank-God !! I told Crystal that "crazy lady" exhibited all the classic meth addict signs (paranoid, delusional, fidigity, close talker, whispering, skinny, drawn up face)  but Crystal never being around druggies didn’t believe me.

We were in the E.R. room for another hour and a half before a nurse came in, and to make the story short… we didn’t get home until 5am. Knowing that that we had to wake up at 7:30am to go to Milwaukee for Crystals O.B. and Kidney Ultrasound appointments, so we weren’t going to get much sleep.

We found ourselves in the local emergency room again today. I knew it was coming as Crystals blood pressures have been all over the place lately as well as the fact that she still has severe headaches that don’t seem to cease without a few milligrams of dilaudid.

We can’t seen to figure out this blood pressure thing. Normally in the daytime she seems okay but come the evening hours and her blood pressure shoots up around the 160’s over 107 or so. With the high blood pressures often come headaches and nausea that leads to vomiting.

As a blood pressure medication the doctors started Crystal on 400mg of labetalol in the evenings (in hopes to curtail the high blood pressures) and they want her to take it every day consistently. The labetalol seems to help when taken in the evenings but the problem is that she does not ALWAYS have high blood pressures (none the less she is suppose to take the medications) and then if she doesn’t have high blood pressures that evening and she does take the medications as directed… well… we then see her pressures drop to about 90/45 and she then has ZERO energy and seems to be on the verge of passing out.

This week we are scheduled to be in Milwaukee for a Kidney ultrasound on Tuesday, they think that her renal artery may be restricted and if so that could be a cause for her blood pressures being so erratic. After the kidney ultrasound on Tuesday we will be back in Milwaukee on Wednesday to look at and talk over the findings of that ultrasound with the transplant specialist.

Crystal is sooo sick of being sick and tired without energy and constantly vomiting that she wants them to just admit her for a few days so they can look over everything and monitor her to see why (once again) her blood pressures are all over the board.

Every time we go to the local ER they are stumped as to what to do as they are afraid to make a "wrong" decision as she is a transplant patient…So basically they just do the band-aid painkiller fix and send her on her way. Its nice that she gets fixed up, but its always just temporary and her headache and vomiting seems to come back within a few hours or so - So we definitely have to get this figured out. 

Today wasn’t so bag. C-Lite woke up late around noon and I gave her the morning meds.

We managed to make it out of the house around 2pm - although she was tired and pretty dizzy.

She was feeling nauseated all day - and driving iin the truck of the bumpy snowy roads made her
all the sicker. After returning home she had felt very nauseated and Ended up taking the phenagrin
Byndryl and a milligram of xanax, which made her tired and now she is asleep. At least she can sleep.
As Oftentimes sleep doesn’t come easily.

Upon talking to C-Lite I think she is considering making some V-Logs as a diary, or Biography, so you may see that soon. Overall today wasn’t a bad health day. 

These last 3 months have been pretty rough, firstly we no longer have our son Hunter - Aside from that Crystal and I expected to see her health get better as the Preeclampsia should have stopped. In the last 2 months we have gone to probably about 3 regular appointments with the transplant team in Milwaukee, and they have a plan to get her back on track. We know that she will forever be on anti-rejection medications as well as medications for her Gastroparesis- But we would hope to bring the health issues back to a more manageable level as they were before the pregnancy.

As of yet we have not had good luck in getting her body to bounce back, actually on the contrary things often times seem to get worse.

Crystal in her pre-pregnancy / post transplant condition had never suffered from high blood pressures, and yet now as she is labeled post preeclampsia her blood pressures are erratic to say the least.  In the last week Crystal has been in the local E.R. five times - just to clarify that means only 2 days this week she has not been to the emergency room.

Typically this is how it goes - around 11pm or midnight she gets a very bad headache, we check her blood pressure at home and she is usually around the 150/108 area. We oftentimes try to use Norvasc, labetalol, or Clonidine to lower her blood pressure. All have been prescribed for her but should be used on a regular basis - problem is it she uses them regularly and her blood pressure is not high it drops so low that she gets close to passing out, so we only tend to use when her pressure is very high. As a side note none of these drugs work on her the alpha and beta blockers don’t help her blood pressure at all, I am not even sure why we try…So we go in to the ER.

As one can imagine we are in the ER so often that most of the ER doctors know her and her issues. Basically they through her I.V. give her 37 1/2mg Phenergan   50mg of Benadryl   and 2mg Dilaudid … This "cocktail" usually stops her nauseous , and takes away any anxiety which should in turn lower her blood pressure, thus helping her headache. As I said this often works, but not always… Either way it can’t be a permanent answer (to go the the ER almost nightly) and we are hoping the specialist in Milwaukee can figure out something different, as her blood pressure only seems to rise around 11pm nightly, even with her taking the Norvasc to head it off. And our local doctors at our local hospital seem very incompetent.

In all honesty tonight I am pissed !!  We went to the local Hospital at 11pm and they were BUSY !! So it took us about an hour to be seen (which is okay) at triage Crystals blood pressure was 140/108 - so they put her in a room (wait another hour) gave her the meds listed above, which kind of just mask the headache (did nothing for the blood pressure) had us wait 30 minutes and brought out the discharge papers even though she clearly wasen’t feeling any better, and despite the fact that her blood pressure was higher, heres her discharge blood pressure… 

So we sat there debating what to do… Knowing that once the Dilaudid wears off her headache was going to be worse than ever with her blood pressure being that high, so we had the nurse re-check with the doctors… and he said she was okay to go home - !! WHAT ??

Seeing as how there was nothing else we could do or say, we went home - and sure enough Crystals headache is back right now, and worse than ever.

The whole situation pisses me off with these local doctors - I mean if you called ANY local ER or nurse and you simply said that you had a blood pressure of 198/124 they would say "get to the ER". and yet our ER is discharging her… Comments? 

On December 18, 1990 when Crystal was only 10 years old she was diagnosed with Juvenile Type 1 Diabetes This disease pretty much consumed her whole life from that moment forward. Normally complications from diabetes can span over a lifetime, with a person not noticing any adverse affects on their kidneys, liver, eyesight, etc for sometimes upwards of 20 years or so.

They say Diabetes is a disease that slowly eats away and eventually kills your body. This statement was not accurate in Crystals case. With Crystal everything was happening backwards, the disease progressed very rapidly and within 10 years the disease had progressed as if she had lived with it for 40 years of her life.

During the time Crystal lived with this disease she graduated Junior high, then High school, then she went to college for a nursing degree. While in college she was an amazing student and was also working full time in the local emergency room, helping people with there illnesses. A few months before graduation and while working at the hospital diabetes took Crystals eyesight overnight.

After loosing her eyesight, she was also diagnosed with diabetic gastroparesis which seemed to shut down most of her stomach functions causing her to be like only the 7th person in the world, and the youngest to receive a gastric pacemaker that would aid her stomach in doing its job.

At this point in time Crystal applied for a pancreas transplant and was turned down as being to great of a risk. Its odd because she needed to transplant to live and she needed it because her health was so bad, and yet these are the same reasons she was denied.

After about 6 months She and her family petitioned congress, the senate, and the medical board and finally she was added to the transplant list in Chicago. After 2 years and 3 false calls Crystal received a pancreas from a very brave young man who did not survive a vehicle accident, the date was September 11, 2004.

During the transplant she was inpatient for about 2 months due to the actual surgery, then some complications afterwards. The transplant was great but it definitely is not without its faults, she now is on anti-rejection medication that she will need to continue for the duration of her life, these medications sometimes make her very sick and on them she most likely will be unable to have children. On these meds if she were to get pregnant there would be a high risk of birth defects or deformity, So if this was to happen then they would have to switch her medications so the baby wouldn’t be at risk, but in doing so that could promote rejection of her transplant.

During the next two years a variety of surgeries happened to try and mend some of the effects that diabetics had caused her in the past. Firstly her gastric pacemaker was removed because it had been shifted during her transplant and now the only thing it was doing was sending electronic shocks to her skin and causing her great pain.

Aside from loosing most of her eyesight when her eyes hemoraged due to the diabetes, she now suffered with Diabetic Retinopathy which threatened the rest of her eyesight.

Initially the doctors in Chicago stated that after the transplant and once her blood sugars were stable that they would consider doing an eye surgery that would allow her to regain some of her vision, and Crystal was very anxious for this, but then they said they wanted to wait at least 1 year post transplant to monitor her. This was totally bullshit seeing as how in that year she would most likely go totally blind.

We eventually found a specialist in Milwaukee who was more that happy to do her surgeries on her eyes without making her wait a year or so. After the surgeries her vision got better, and although she is still legally blind… we are very happy she still has some vision, and for the most part is healthy and out of risk.

THE SUMMARY:

With all of the above, I am grateful to have Crystal in my life. With as much as she has been through and as close to death as she has been many times, she is an amazing girl to know.

I have dated and seen many girls who were seemingly ungrateful for everything, and always wanted more and more, just plain spoiled and ungrateful people.

It is now amazingly refreshing to be with someone who cherishes every moment there is to Cherish. She has taught me to enjoy the simple joys of sunsets, and birds singing, and the awesome beauty of nature.

Its been almost 3 months since we buried out son Hunter. The months since his death and funeral have been very hard on us. Most people think that when something like this happens that people should just move on and life will return to normal in a short time - not true.

I had taken some time off of work to arrange the funeral and to take care of Crystal medically, but while I was on the leave a lot of changes were happening with the company I was working for and by the time I was ready to go back there really wasn’t a position to go back to.  So I have been unemployed ever since.

Crystal is still going for checkups and doctors appointments at least once a week as her body is having a difficult time bouncing back from being pregnant and having to give birth. Her kidneys took a big hit and we fear there may be some permanent damage to them, her pancreas went through rejection early on in the pregnancy and there still altering her medication a bit to get a happy medium where the anti-rejection medications will do there job without putting too much strain or doing to much damage to her kidneys.

Any anti-rejection medication will do damage to the kidneys so the key is getting a happy medium that won’t hurt the kidneys too much, the primary medication for all transplant patients is called prograf, its a wonder drug to fight off rejection but of course the side effects of all the drugs are kidney damage. So we are taking it day by day…tomorrow we will be back in Milwaukee for a kidney ultrasound to see what level of damage has occurred.

Hunters monument is paid for and picked out, but it may take up to 6 months to get it shipped and engraved. They are planning to get the foundation poured before the snow falls that way when the monument is ready it can be placed no matter what the weather.

On the 2 month anniversary of his death Crystal and I went to the cemetery for the first time since the funeral. It was hard to do as the feelings are still fresh and as ripe as the day it all happened. Going back to the cemetery brings it all back as if no time has passed at all, we saw fresh flowers on the graves of baby’s that died 60 years ago…it just goes to show that the children are not forgotten.

We placed a home made marker on Hunters grave (just until the real one is laid) it’s Christmas like and we thought it was cute… We miss him. His due date was on Christmas, so as that day nears it seems to get harder on us as we think of what life should have been like with our son. Heres a couple pictures of our temporary marker.

These past four weeks have been difficult to say the least. Crystal has been out of the hospital for about a week now (yay!) and everything seems to be getting a little better.

Crystal’s blood pressures have been pretty stable recently, the vomiting has pretty much quit although she still gets nauseas from time to time. Although her and I hate the whole hospital scene I hate to say that we haven’t been back there since she was released last time…our plan was to go to Chicago today and see her primary at the University of Chicago and let them do some blood levels and work on a maintenance plan to get her back on track, but we overslept so Chicago didn’t happen.

Our second plan was to go to Aurora medical (locally) and get labs drawn so we can at least see how the cbc, platelets, and creatinine levels are…but we overslept.

We are going to a few places tomorrow to look at monuments for Hunter, as it may take them a month to make one and we are concerned that winter is coming and with the ground freezing…if we wait much longer they may not be-able to "set" the marker until the spring. So tomorrow we will get it all picked out and they will start working on it, as I mentioned earlier we would like one with Kittens !!

As far as our mental state - we are doing better, its been ALOT to go through and just the other day C-Lite and I went to a birthday party at Chuck-e-cheeze and she broke down crying as we had once said we would have our parties there for "our" son.  And as December comes closer and we get closer to her due date she seems to be having a hard time, especially when that day comes and she will say "Today was my due date" then realizes that its just another day.  It’s sad.        I’m Sad.